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Our Stories

 A very special thanks to all those who have contributed so graciously to our stories. You have definitely made a difference in the lives of other CADdys.

To send us your Story, use the Contact Us page.

 

2007

Betty's story

I am a 68 years young (in 2006) Caucasian female born in New York.

 Ever since my 30’s, I had been considered to have low-normal hemoglobin trending between 11.6 and the low 12s. In early 2000, I wasn’t at all concerned when my gynecologist suggested I should consult my internist because my 11.3 number was too low. I was in for a rude awakening.

 After several rechecks over the next 3 months, my internist referred me to a hematologist/oncologist for more in-depth testing In the late fall of 2000, I was very upset when I learned of my diagnosis of Cold Agglutinin Disease Auto-immune Hemolytic Anemia. I knew of no one with that diagnosis and felt very frightened and isolated.

 To arrive at that diagnosis I had been given many sophisticated blood tests, GI testing--colonoscopy & gastroscopy, a CT scan of my internal organs, and a gallium x-ray with radloisotopes of my lymph nodes. Ultimately, I had the bone marrow test also. Fortunately, all tests were negative

 Since no underlying disease was noted, the diagnosis was Primary Chronic CAD (Cold Agglutinin Disease). It is considered idiopathic (no known cause) Cold Agglutinin Disease. Secondary CAD is caused by an underlying lymphoproliferative disorder such as lymphoma or an infection such as mycoplasma pneumonia or another autoimmune condition like lupus etc.

 I had monthly CBC (complete blood count) checkups when my hemoglobin was fairly steady in the 11 range and as it went lower, the visits became more frequent

 I could almost predict what my hemoglobin number would be by the way I felt. When it was high, I’d be full of energy and could “chop wood”. When low, I’d be very tired and wake up feeling as tired as when I went to sleep. Also, I tended to feel more out of breath on exertion, was very pale, my eyes looked yellow, gums and inside eyelids were a very light pink color and workout seemed impossible because my muscles in my legs felt strained as if I couldn’t take another step and had to sit down. On two occasions I experienced brown urine--both times I was sick with the flu and a virus infection.

 In 2002, I was started on Procrit, a bone marrow stimulator for red cell production and continued with weekly self-injections to help raise my hemoglobin.

 ln the winter of 2006, even the Procrit wasn’t working and my hemoglobin reached a low of 7 necessitating 2 units of transfused blood. Additionally, I was treated with 4 weekly infusions of Rituxan that raised my numbers only slightly and for a short duration.

 I should note that I had been ill several times in the fall and winter with various colds, a herpes outbreak, and other viral infections. There seemed to be a direct correlation between these illnesses and my lowered hemoglobin.

 By spring 2006, my doctor decided to re-treat me with another round of 4 weekly infusions of rituximab (Rituxan) and this time I had a more positive response to the drug. By summer, my hemoglobin rose to 14.2 and now 7 months later, remains mostly at 11+ with bi-weekly Procrit usage. I am still hemolyzing, but apparently compensating for the loss with sufficient red cell production. I continue to take approximately 2mgs of folic acid daily, exercise, keep warm, and try to eat healthily.

 Rituxan is a wonderful drug and can sometimes be more effective after the second or third round of treatments as it was in my case. Heretofore, corticosteroids and chemotherapies and immune suppressing drugs have been our only treatment options and all have side effects with the results being mostly temporary in nature.

 There are other single agent monoclonal antibodies in clinical trials. These are designed to target a specific site in the body with the goal of eliminating damage to the surrounding healthy tissue. This is good news for all of us.

 I have consulted with four hematologist/oncologists in the Miami area, and 3 in New York and all agree on the CAD diagnosis.

 

2010 UPDATE

 For 3 years following the Rituxan treatments. I continued to fare well using only 2 mg. of folic acid daily and weekly 10,000 unit, low-dose Procit.  During the early Fall of 2009, my hemoglobin headed south due to a respiratory/sinus infection and the stoppage of the Procrit at the urging of my new New York Dr. Richard R. Furman who advised me of the FDA warnings of possible thrombosis. He also expressed concern that I wasn’t making enough reticulocytes-immature red cells.

 I had a CT scan of the pelvis, abdomen, chest, Bone Marrow Biopsy, Metabolic Profile, Coombs Direct and Indirect Tests and more.  All ruled out Lymphoma.  My HGB continued to drop until it reached 7.2.  It was decided to treat again with Rituxan X 4 and also to do a Plasmapheresis to give me a better chance to respond to the Rituxan.  Also, I received 2 units of blood to raise the HGB so I’d have more energy and be out of the danger zone.

 My numbers improved in the 9’s but after several weeks of watching and waiting, it was decided to retreat with Rituxan again between both my doctors, Dr. Michael A. Schwartz, Mt. Sinai Comprehensive Cancer Center, Miami Beach, Florida and Dr. Richard R. Furman, New York Presbyterian Hospital, Weill Cornell Medical Center, Hematology/Oncology, New York City. I have had to again use Procrit to avoid transfusion but stop when I reach a hemoglobin of 10 or higher. Presently, I am at 10 and on W & W (Watch and Wait) again.

 We are discussing what, if anything, should be done next, to try to put me in remission. There are new single agent monoclonal antibodies like Rituxan which are being considered at this time. Some have already been approved for use for Chronic Lymphocytic Leukemia, Waldenstrom Macroglobulinemia (an indolent form of Non-Hodgkins Lymphoma) and Lymphoma and Multiple Myeloma and are sometimes used in combination with other treatments. These could possibly be useful for CAD patients.

 To be continued....

Betty Usdan

kolbysmum@aol.com 

 

Graeme's story

I first noticed my ears turning dark blue (I thought it was oil on them) about mid 2003 when I was 62.  I was going to the gym at the time and I noticed my stamina and fitness was getting worse, not better!  I never realized there was anything wrong. Then my fingers started going numb if I touched anything cold and my Doctor diagnosed Raynaud's syndrome. So I started wearing gloves. I noticed this particularly in the winter mornings when getting things from the fridge for breakfast. There was concern that my heart pills (I had two heart attacks in 2000) could have been contributing to this.

I am a keen yachtie and we had our Opening Day in September.  I got a shock when I went to the toilet after sailing and saw that my urine looked like blood. My Doctor arranged for me to be seen at our local Hospital and they started doing tests to try to find out what was wrong. There were confusing symptoms as I had a very sore prostate at this time and I know I felt sure it was prostate cancer. I had difficulty believing that they couldn't find it. I also developed a very sore upper arm which stayed around for the next six months.

I started keeping a Diary on how I felt and an extract from a day about this time is:
"A cold wind is blowing. My fingers got very cold and my ears went black after I had been outside for about 15 minutes. My fingers were also very cold and after I had warmed them up under hot water, they again went cold if I touched anything cold. I am wearing gloves and a hat inside and out. I am wearing thermals to keep warm. I have put on two pairs of socks as my toes were tingling, and very cold. I passed blood again in my urine this afternoon. I have bottled some to show my Doctor. "

A month later I wrote:
"While I don’t want to be pessimistic, I believe that I am getting worse. My fingers and ears are going blue/black more often even though the weather is getting warmer. I wear a hat and gloves a lot, particularly whenever there is a cool breeze, and also when I get up in the morning. Even then my ears can still go blue. My legs often feel quite weak, and I occasionally feel slightly dizzy. I didn’t have all these problems at the beginning of October."

During this time I had many tests done at the Hospital...................and towards the end of November 2003, they told me I had Cold Agglutinin Disease.

Over the next few months I was given some treatments to try to alleviate my problem. However none were effective and my condition deteriorated. My blood count fell to below 0.7 and I started needing blood transfusions. Initially these were at six week intervals, but by August 2004 I was down to two week intervals. It was then decided to give me Rituximab, and I am fine nearly three years later. My latest blood count is about 14.0, I can do most things, I still have to keep very warm or blood shows in my urine, but life is great!

The cat's name is Bootie.

 

Update February 2010

Bootie is now a little larger, but lovely. I have just seen my Haematologist and he is extremely pleased with me. It is 5 1/2 years since he treated me with rituximab, and I have had no other treatment since, apart from one folic acid pill daily.  At the time I was in extremely poor condition, and receiving blood transfusions every two weeks. My CAD is now in remission and I don't have any visible symptoms. Last weekend I capsized my small yacht and was in cold water for about 10 minutes. I had no after effects, and my HGB was 13.6 three days later.

So am I cured? My haematologist doesn't know the answer to this, and wants me to visit him annually so that he can monitor my progress. I can't imagine that it will come back....but I don't know why it started in the first place so maybe it will......?

On reading your stories I am very aware that I am very lucky, and that most of you struggle to cope with your CAD over many years. You are in my thoughts.

Graeme Hore

yottie@clear.net.nz

 


Share Your Story


Bea’s Story

This is a photo of myself and my husband, my grandchild and our new puppy!

In the winter of 1982, our family, consisting of my husband, my 13-year-old son, my 7-year-old son, and myself were tobogganing in Palos Hills, a suburb of Chicago.  At the bottom of the run my son looked at me and said, “Mom, you’ve got dirt all over your face.”  I knew that couldn’t be true – we were in the snow!  So, off we went to the car and, sure enough, looking in the rearview mirror I could see what appeared to be purple vertical lines on my face.  For whatever reason, I then looked at my feet and legs and they, too, had dark lines on them.

 My family physician sent me to a hematology specialist.  Tests were done and I was sent home with the admonition of: “Don’t go out in the cold until we get the results of your tests.”  I was found to have a positive “direct Coomb’s test and a positive antibody detection test.”  My “cells were coated with complement components and the serum reacted with all red cells tested.”

At that time I did not have a clue as to what that meant, but the diagnosis of cold agglutinin disease with autoimmune hemolytic anemia had been confirmed.  I was fortunate enough to be diagnosed correctly immediately and did not have to endure other tests or a bone marrow biopsy.

 Being 37 years old at the time and never having heard the words “cold agglutinin” or knowing what that diagnosis would mean to me or my family, I felt very frightened.  Additionally, finding out how rare this diagnosis was left me feeling extremely isolated.  I had not heard of, nor did I know a single other person who had this rare diagnosis.  I know (now) that I am one in a million (literally), but finding that out didn’t make me feel any better either!

When I was diagnosed, my titer was quite high at 1:2048.  Living in Chicago in the winter is quite a challenge when you have CAD.  There were times when my blood counts dipped quite low and the fatigue became all encompassing.  When outdoors, every exposed piece of skin had to be covered for it would become mottled.  I found I had to use gloves to go into the freezer.  I could not longer put my hands under cold water or even hold the garden hose.  Down coats, down mittens, and boots, even when there was no snow, became the dress code.  Remote starter for the car so I could go from a warm house to a warm car.  Obtaining a handicapped parking placard so I could park close to entrances.  All this and so much more became the “norm” in my life. 

Through  all this I had a compassionate and caring doctor at Loyola Medical Center (Dr. Messmore) who watched over my counts (and me) and taught me how to set limitations for my physical well being.  Fortunately, I have never had my counts dip to a place where I had to have any treatments.  However, I was told about plasmapheresis and that a “chemo drug” could be used if that happened.  I was also told that this could progress to a lymphoma or a myeloproliferative disease.  Again, there was no one to talk with about these possible “scary” prognoses.  My much-revered Dr. Messmore has since gone into retirement.  He was replaced by Dr. Godwin who has since gone on to become the Director of the Cancer Center in Southern Illinois.  And now, Dr. Barton has, very recently, replaced him. 

It has been 24 years since my diagnosis of CAD.  I am now 61 years old (2006).  I have “coped” with my diagnosis.  It has profoundly changed my life.  It has changed the way I live my life.  It’s been an unseen presence every day in my life for all these 24 years.  It is a “hidden” handicap.  Because of my CAD I have had to enforce the Americans with Disabilities Act (ADA) at my place of employment because I could not work in the temperatures maintained in my workplace.  Because of CAD I have had to endure the taunts of uninformed and ignorant people when I stepped from my car in winter after parking in the handicapped space and all they saw was someone who was not using a cane or a walker or was limping and they assumed I was not “handicapped.” Because of people’s ignorance about CAD, I have been asked, “Is this related to AIDS?”

 But, because of CAD I have learned:

            Tolerance and Understanding that things are not always what you see on the surface.

            Forgiveness of people’s ignorance.

            Patience and Perseverance in waiting for this Web Site and the support of people with a shared experience.

            That there is always Hope.

Bea Paller

bepal@attglobal.net

 

Laurie's Story

My name is Laurie and I am 51 years old.  I live in Washington State and would enjoy all of our 4 seasons if I could just go outside more than 4 months out of the year.  I used to love to ski and that is how I found out that I have CAD.  I had been skiing and was really without energy to walk up small inclines carrying my skiis.  I came in on my last run and took off my boots. My legs and feet were so ghostly white.  (2001)

I had been to the doctor a month earlier and when I had my CBC run, I was a little low.  The doc told me to take iron.  I took the iron and continued to ski.  I called them after seeing my white legs and told them that I could hear my heartbeat in my ears.  She said that they couldn't get me in right away and I should go to minor emergency.  I went and they took one look at me and told me that they would need to draw blood.  The doc called me that night and told me to get to the store and take 1 mg of folic acid and stay warm and to see a hemotologist.  Well, the only hemotologist here are in the Cancer clinics.  I didn't know that until I walked in and it was such a shock.  The doc tried cyclosporin on me...a cancer drug, and it didn't work.  Then she sent me to a teaching hospital in Seattle.  They took more blood.  I was already at 7 on my hemoglobin and still they took more blood.  They also did the CAT scan and bone marrow biopsy.  All normal except the CAD.  Their recommendation:  Cytoxan....another chemo drug.  Of course, it didn't work!  It just made me loose my hair and feel awful.  Then my doc decided to try the Rituxan.  It brought my titer down to 1:256.  It stayed that way for about a year.  Then it popped back up to 1:1024 and has been that way since. 

The end of January I got the flu.  It went to battle with the CAD and I lost.  I ended up in the hospital for my first transfusion.  My Hemoglobin had been around 10 and within 2 days, I was at 6.  They gave me 4 units of blood and the doc also gave me  2 shots of Prednisone.  I left the hospital with a hemoglobin of 12.1 and felt great.  While I was on the Prednisone, I didn't loose any blood.  Within a week, my hemoglobin was at 13.2.  I felt wonderful!  Then I was weened off of the Prednisone and I started to loose blood again.  Prednisone is only suppose to maybe work for CAD with low titers and high amptitude.  Well...I have high titers....I don't understand why it worked...I only know it did, but it's not a drug to stay on for very long.

March 2007...just finished 4 rounds of Rituxan.  Found out today that my titers haven't changed.  I'm still at 1:1024.  I also lost a little vision after the 2nd round of Rituxan and went in for a check. They said that I have Narrow Angles which can lead to a glacoma attach from pressure on the optic nerve????  Anyway, they have to do a laser hole in each eye for drainage.  The reason that I have to have it done now is because I am not suppose to have any antihistimines that can dilate your eyes because it can cause an attack.  They give Prednisone and Benedrayl (an antihistamine) with each Rituxan treatment and the doc wants to do another 4 treatments in a month or so.

June 2007....Life is good since the Rituxan treatments.  Last week I had a blood draw and my hemoglobin was 13.6 and I wanted to dance.  That's the highest it has been in 6 years.  I feel great, and have lots of energy.  The only thing that I have changed is that I quit drinking cold beverages....it was hard to give up, and I started taking 500mg of Vitamin B5. 

I think that I am going to try and ski this season.  I'm only going to make a few runs and hopefully on a sunny day."

Life goes on......

 

Update July 2010

I went to the doc about a month ago for my 6 month blood test.  My CBC six months ago was normal and my titer was 1:128.  So, I wasn't expecting much change.  I had walked outside all winter without covering my head and didn't have any symptoms.  I very rarely have any symptoms with the titer that low...it's only when it gets to the 1:1024 that the purple nose and blood loss come into play.  So, I went and had my CBC drawn and it came back at 14.2.  Highest it has ever been and very normal.  Two days later, they give me a call to tell me my titer is 1:8, which means that there was no cold agglutinins in my system.  I about fell over.  The doctor called me and said that my last round of Rituxin  (March 2009) must have killed the clone.  He thinks it is gone and won't be back.  I will still go for a blood test in 6 months, but I will go on as if it is gone. Yeah!!!
It came out of the blue, and it left the same way...

Laurie Riffle  

laurie@rrcolor.com

 

Marilyn's Story

I am presently (2007) a 48 year old female and I was officially diagnosed with Cold Agglutinins 3 years ago, but the doctors think I had it longer than that.  I tested positive for Mycoplasma Pneumonia at the time also.  I have done just fine for 3 years.  My bone marrow has fully compensated me for the low grade hemolysis that my body goes thru.  I have my blood counts done on a regular basis.  At the time I was diagnosed my Hematologist wanted to be aggressive and try to reverse the Cold Agglutinins.  I checked with several other Hematologists in California and decided not to do anything while my bone marrow was fully compensating me.  I did not want to take steroids or immuran back in 2003.

Then on March 1st, 2007  I came down with what my allergy doctor thought was a virus.  I was home, sick for 5 days.  The first 4 days I had a fever of 101.6 that would go down to 100.5 and then back up to 101.6..  continually.. on the fourth day on March 4th I noticed I was looking pretty pale....  and I couldn't keep my fever down so I contacted the doctor who told me to take Motrin ( do not take Motrin)  which I did, quite a bit .. by day 5 march 5th, 2007  my palms were white and my heart was beating really fast and pretty weak.  I ended up in the Emergency Room at 12:30am on March 6th, 2007.

My hemoglobin was 4.8 and I was told I needed a transfusion......  I refused..  I thought they didn't keep my blood warm and they did the test wrong..  my RBC count was 1.7 and hematocrit was 13..  They called in a Hematologist that I had seen back in 2003.....  She advised me that I needed a blood transfusion, I refused.  She started me on Prednisone 50 mg a day...and my retic count was 0.06, that meant my bone marrow was not producing blood cells.  They called in a Infectious Disease specialist...  The both of them thought maybe I was exposed to something, or possible the heavy doses of Motrin  which can cause aplastic anemia... (don't take Motrin)  only Tylenol...

Then they decided maybe I had (Parvo-virus b19) also called the (fifth disease).  Usually kids get it.  It gives them red cheeks and a rash on the trunk of their bodies..  It a simple virus for them..  but, People with auto-immune blood disorders... have major problems with this virus..  It tells the bone marrow to stop making red blood cells.  They did a bone marrow test on me that showed I wasn't making any red blood cells. 

On the 2nd day when my doctor warned me that I could die and or have a heart attack and stroke.  I agreed to the blood transfusion.  I ended up having 2 of them, which they gave me with a blood warmer..  I then went on 5 days on IVIG.. which is  Immuniglobins given by infusion for treating Parvo-virus b19..  They decided to treat me for the Parvo even thou the test results were not back yet.  On the 4 th day of treatment my test results showed I had Parvo-virus b19.   I was also given 4 Procit shots, one every 48 hours.  I was in Intensive care for 9 days and on the chemo-ward for 3 days for a total of 12 days in the hospital. 

I was also given 1 dose of Rituxan on the chemo ward..  By the time I was discharged my hemoglobin had gone up to a 9.2 from a 4.9  and my hematocrit had gone to a 29 from a 13... and RBC was 3.2 from a 1.7..... my retic went up to 10.3 from 0.06 which showed my bone marrow was again making blood cells.

It was the worst experience in my life...  I had no idea that I could get this parvo-virus b19 that could kill me. I can never get Parvo again as my body will have anti-bodies for it. I am presently weaning myself off the steroids and am continuing my treatment of a total of (4 ) Rituxan treatments to try to reverse the cold agglutinin.  My cold agglutinin counts are pretty high right now.   My doctor here wanted me to stay on the steroids but the calif doctor advised me to wean off them.  I have high cold agglutinin count and low warm agglutinin count... with a positive Coombs test...

I have undergone 2 treatments on Rituxan  with no side affects... I have 2 more to go....  The doctor has discussed with me the possibilities of doing up to 8 treatments.....  I agreed to do 4 treatments and then we shall see what the results are.

I had great doctors here in Vegas, who came up with the right diagnosis and saved my life.  I wasn't the most co-operative patient.  I questioned everything.  The lab at the hospital continually made mistakes in not keeping my blood warm.  They kept my room at 80 degrees to keep me warm....

I wanted to share this story.   This is something that could affect other Cold Agglutinin patients.....  The CDC -center of disease control has information on this virus... pretty informative..  90 % of the senior population has already been exposed to it and have anti-bodies to it..  It can only create a crisis situation with someone who has an auto immune blood issue..  like Cold Agglutinin patients like us...

I am on the upswing and feel pretty good..  It was a sur-real situation for me...  I had to take a step back and let the doctors do all these things to me.  My personality is such that I question everything and want to be fully informed.  Due to my low blood count, my head was pretty foggy at the time of admission.......  I had great support people ( my friends) who helped me thru my 12 days in the hospital.

You have a great informative web site.  I dont remember seeing this 3 years ago when I started doing research on my Cold Agglutinin disease.  I will be glad to receive email with any questions,

Marilyn Fishman Beach

Truffles4marilyn@yahoo.com

 

John Harm's story

My father, John, is 88 years old.  He also has lymphoma and has received a series of chemotherapy treatments (Rituxan) about once a year for the past 6 years or so.  His lymphoma did not respond to the chemo this fall so he received a stronger chemo after Christmas.  The treatment consisted of Rituxan, Fludara, and Cytoxan and really lowered his hemoglobin and threw off his white cell count.  He received weekly Procrit shots, received 2 units of blood, and stopped the chemo.  Finally, he had bone marrow extracted late in Feb. indicating his lymphoma seems to be back in remission.  As of 4/5/07, Dad's hemo has come back to 10.9 following 2 iron I.V. infusions and a blood transfusion.  Currently, he is continuing with Procrit injections and feels better.

His Cold Agglutinin Disease was first diagnosed as Raynaud's Syndrome in 1994. He tried to avoid the cold but he was still helping on his farm in Illinois so he was definitely out in some chilly weather.  I'm not sure of what particular treatment he has had specifically for CAD other than the Rituxan, etc. for lymphoma.

My mother has taken excellent care of Dad since his major heart attack in 1992.  Now when he needs her the most, she has been stricken with ovarian cancer.  I live in Georgia, they live in Illinois.

My parents do not have email so I'm your email link! ...... Both my dad and mom are mentally sharp and had been physically active until these past months.

It was helpful to read of the CADdys' treatments.

Thank you for your interest in my dad's case----Diane Harms Mulkey


Diane has sent us this addition to John's story.
I'm sad to tell you that John passed away on May 13th.  Dad was doing well in the fall (08) but had to have an appendectomy on Oct. 8.  He seemed to be doing well but on Oct. 21 my mother died of her ovarian cancer.  Dad had a heart attack that same day!  He barely survived that but recovered and even lived alone at his home again.  He had a couple episodes with fluid in his lungs in Feb. and April and shortly after his 90th birthday, he was diagnosed with lung cancer.  Always a courageous fighter, Dad took a chemo treatment but it took his blood counts too low.  I don't believe that his CAD was a factor in his final illness but his low hemoglobin affected his energy during his last years.  It was our family's honor and privilege to take care of our awesome dad and we miss him greatly.  -- Diane

 

We were very sorry to hear that John died on 13th May 2009.  Our deepest sympathy goes to Diane and her family. Personally, I was quite taken with the photo shown above which Diane sent us. For me it typifies the hospital or outpatient visits many of us have made. We sit in a comfortable chair, are connected to a blood warmer and get a transfusion. And the nurses always look after us...(Graeme)

dianemulkey@bellsouth.net

 

Katherine's Story

 I'm 34 years old and live on the northeast coast of England, one of the coldest places in the country. I was diagnosed with cold agglutinin disease 4 years ago, 2003, although I had been feeling poorly for the prior 12 years. I had had periods of anaemia and no one seemed to be able to tell me what was wrong with me. I experienced fatigue, muscle weakness, sore throats, and Raynauds and was told I had M.E/Chronic Fatigue Syndrome.

It was only when I had a viral infection in 2003 and became jaundiced that the Cold Agglutinins was diagnosed.  Doctors found an IgM paraprotein. My haemoglobin level had been fairly stable at around 9.  Following the few occasional drops, I was treated with steroids which raised my blood back up again. My haematologist believes that I, in fact, have had CAD all the time.

About a year ago, I started getting swelling and pain in my finger joints that were initially treated with cortisone injections. However, the swelling is still there and one of my fingers has become quite deformed. I've seen a rheumatologist who says its some form of inflammatory arthritis, which may even be connected to the cold agglutinin disease. I have recently had a bone marrow biopsy where no serious abnormalities were found but my bone marrow is apparently working very hard.

I have been treated with methotrexate and azathioprine (separately) which have both caused great drops in my haemoglobin levels. I've been on prednisone again which is presently maintaining my blood. Just started my first course of Rituximab yesterday (May 2007). Had no reactions so far but very tired as my haemoglobin is still at only 7. Hoping the Rituximab works!

Has anyone else who has CAD also developed arthritis? Also, has anyone had any similar experiences with the methotrexate and azathioprine?


Katherine Pringle

katherinepringle@hotmail.com
 

Ken Mascord's story

Hi there, my name is Ken Mascord and I live in Sydney, Australia.
My wife came across the CADdy web sight while searching for information on Cold Agglutinin Disease after I was diagnosed with the disease some 12 months ago.

I had been showing some signs of aneamia with my doctor suspecting some internal bleeding.
An investigation into the possibility of internal bleeding and the repair of a fistula at the same time resulted in heart arhythmia occurring in the cold operating theatre. A visit to a Heart Specialist gave no indication of a serious heart problem but a resultant blood test had me sent to a Specialist Haematologist who immediately identified the problem as Cold Agglutinin Disease.
A survey of previous blood tests indicated that I had had the disease for some years but due to our relatively warm climate it was not obvious till the stay in the cold operating theatre and the resultant anaemia. I have had various tests including bone marrow but no obvious cause could be found for the disease.
I have had two blood tests since diagnosis which indicate that I am producing sufficient red blood cells to replace those that are destroyed as a result of CAD. Currently I am to have blood tests at six monthly intervals to check progress. There is no suggestion that I undergo any special treatment other than to keep warm and take 5mgm of Follic acid daily.

It is a pleasure to be able to look at one web site for the information on the disease and I will continue to monitor and will contribute to the site when appropriate.

Ken Mascord


KRM131131@aol.com

 

Ken Murton's story

I am Ken 73 years young, living near Worcester England.

I was first told I had cold agglutinins in my blood about seven year ago, I hadn’t been feeling well, no energy also lost some weight and my urine was very dark. So went to the Doc’s and had a blood test the results showed cold agglutinins in the blood, I can’t remember whether the Doc told me my haemoglobin count was down, all I can remember was he told me to wear a hat and gloves and try to keep warm. He said nothing at all about what could happen if I didn’t keep warm.

Having always been quite fit playing golf three or four times a week and table tennis in the local leagues, I didn’t take too much notice of the Doc’s advice and carried on as normal. I first knew something was wrong when playing table tennis I couldn’t get my breath and my legs didn’t want to move, I had never experienced feeling that tired before, but never associated it with the cold agglutinins. I played golf at the weekend and found it very difficult, just walking was a great effort my legs felt like lead and I was struggling to get my breath. Being a complete golf nut I carried on playing for a while, each time I played I had quite severe pains just above my eyes, thankfully they didn’t last too long, about forty minutes. I went see the Doc; he told me they were cluster headaches. I am sure they are connected with the cold agglutinins. Every time I go out in the cold even with a woollen hat and gloves I can guarantee I will get the pains above the eyes, it doesn’t happen when the temperatures are in the sixties.

In March 2003 my wife had quite a bad bout of flu, which being generous she passed onto me, I can remember my eyes being very painful and feeling very low and weak. We went to the Doc’s together and explained the symptoms; he said there was no point prescribing anti biotic as we were probably over the worst. The next day I was much worse, struggling to breathe and just about able to walk, my wife managed to get me back to my regular Doctor and he arranged for me to have a blood test, my haemoglobin count was 6 so he arranged for me to go into hospital that day.

I had lots of tests; the blood test showed my haemoglobin was still 6. I also had an endoscopy, a body scan and bone marrow test. At first they couldn’t find anything wrong, after a couple of days they told me it was cold agglutinin disease. I was told I needed to have a transfusion, the nurses giving the transfusion had never had to heat the blood before, and they eventually managed to get the heater and the blood to work together. I had two units of blood but that wasn’t enough to get to get my count high enough to come home. Because of the shortage of beds I was moved to another ward to have more blood, the nurse giving the transfusion didn’t know the blood had to be heated, I said to her I think the blood has to be heated she replied we never heat the blood. I asked if I could see a Doctor.
And explained the situation and after some while they managed to find a heater. I had two more units of blood, which brought the count up to 9.8
I was told they would like to have got the count to ten plus but that I would be able to go home next day.

I have been seeing a Haematologist on a three monthly basis where my blood count is generally between 9.3 and 10.1 it has never got above 10.1. I ask lots of questions, but always come away feeling frustrated that there is nothing I can do to improve my blood count. I take 5mg of folic daily. Having accidentally found your website whilst I was looking for rituximab as a treatment, I was thrilled to read your stories, and find that you and some other sufferers had tried rituximab, with it seems some very favourable results.

I first read about rituximab about 10 months ago but the findings were a bit scary, in the article I read it had been tried I think it was twelve cases, but there were two fatalities that happened within twenty four hours of treatment. I didn’t like the odds and generally with a blood count around 10 seem to be coping fairly well, so didn’t follow it up.

But reading your stories has been a real boost to morale. I have to see my Haematologist in July I shall take your stories with me and hopefully he will look in depth at the possibility of me trying rituximab.

I am very pleased to have found your website and would appreciate any feedback that you feel would be of interest.

Ken Murton

murtonken@hotmail.co.uk

 

Marylin Porche's story

My name is Marylin Porche.  I am a 58 year old married mother of seven grown children ranging from 40 to 18.  Until this past January I considered myself a very active healthy person who walked 3 miles a day five days a week, weather permitting.  I ate healthy and worked in a school setting as a paraprofessional assisting teachers in a classroom.  I have 14 grandchildren who all live within a 2-mile radius of our home. 

I started getting chest pains and had difficulty breathing when I exerted myself in January of 2007.  I saw my family doctor who immediately had me see a cardiologist.  I, of course, couldn’t pass the stress test and the blood work showed I was severely anemic.  I was hospitalized for my first blood transfusion on Feb. 8.  My  HGB was 9.6 and Hct. 27.  A hematologist was called in and they took many tests.  The transfusion brought my levels up to 12.0/33.5. 

Six days later my counts had dropped back down (9.2/25.8).  I was hospitalized for five days for observation while they treated me with salumedrol injections, took a battery of tests including CT scans and a bone marrow test.  I was sent home on the 21st with my levels at (9.7/27.4) During this time I was very weak, jaundice, and was not very clear headed.  I was on prednisone and not sleeping very good at night.   

Two days later I was back in the hospital for my second transfusion, (2 units) My count had dropped to  (7.6 /20.9) Exactly one week later my counts had dropped back down to (6.8/18.8).  At this point they gave me 3 units of blood which brought my counts to (11.6/30.8).  I was beginning to think that I could only live with other people’s blood.   By this time we had received a diagnosis of cold agglutinin/hemolytic anemia.  They were warming my blood before transfusions and at my children’s request I was receiving directed donor blood.  They were also premedicating me with Tylenol and Benadryl before all infusions because of the itching reactions I had gotten from previous infusions.

 Ten days later I was receiving my 4th transfusion.    During this time I obtained a second opinion from a hematologist in New Orleans.  He agreed that we should proceed with Rituxan treatments.   We had been waiting for over a month for insurance approval.  During the month of April I received four weekly Rituxan treatments with no reaction.  My levels since the treatments have remained around (9.5/27). They fluctuate a little but I have not needed any further transfusions.  It seems as though my body has adjusted and I can function at these levels.   

I have not returned to work yet, but I plan to in early August when school starts again.  I have started walking again, though only 1-½ miles a day.  I can maintain my housework though at a slower pace.  At the beginning of June we repeated the CT scans and bone marrow.  The scans showed no change and the preliminary results of the bone marrow were good.  

I am very thankful for this web site. After reading the stories of others, it reinforced what I had already begun to believe; that with a positive attitude I could live with this condition and still function in the world.  I have faith that all will be well. 

Marylin Porche

merl210@att.net   

 

Heather Orr's story

May I introduce myself as Heather. I am an Australian aged 30 with a father (72 years) that was diagnosed “officially” with Cold Agglutinins Disease some 5 years ago, but it was only at Christmas 2006 that we really understood how serious it can be if not monitored!

 My father visited several doctors and specialists over the past 5 years at several major hospitals, and had a battery of tests undertaken and the results sent on to his (then) General Practitioner.  The GP relayed to my father only the details “you need to take iron supplements, and keep warm in the cold, and come back for blood tests every few months”. So for five years, my mother (a retired trained nurse) and myself assumed only that he was iron-deficient and needed to have three-monthly blood checks with his GP. We didn’t know the true diagnoses by name at that time, or its implications.

We kept asking that GP when he would do the blood tests, but he kept putting them off and off because of the time involved to do them in a general surgery. My father has a host of other medical problems as well as, not least of all several skin melanomas that had to be removed in day surgeries.

In December 2006, I had booked a flight to New York to visit my boyfriend and his family for a few weeks. Those plans changed a few days before I was due to leave, when my father stumbled in the early hours of the morning from his bed, yellow as a banana skin from jaundice and barely conscious.  My mother called an ambulance and they rushed him to hospital. He was soon admitted through the emergency ward and observed by a registrar, who diagnosed a Urinary Tract Infection. Because my father had an elevated temperature (39C), and was feverish, they removed his blankets and gave him cold water to keep his temperature down, as well as IV fluids and antibiotics to treat the urinary infection. They stuck him in a bed underneath a rotating fan.  All bad moves. Unfortunately, we had no idea what my father’s true diagnosis was.

When things didn’t improve and he started to go downhill even more, they transferred him to that same hospital’s aged care ward, where they undertook blood tests. They started to request more information from my mother and I, but we had so little to offer. We had never truly been properly informed. They kept him in the aged care ward that night, but by the time I went to leave at 8pm, he was shivering madly and complaining to me of being cold. When I asked the staff for more blankets, they told us it was the fever, and to not put too many blankets on him. I left him to go home to sleep, and went back first thing the next day. What hit me that day will stay with me for the rest of my life!

I arrived with my mother to  find his ward full of staff from the Medical Emergency Response Team (the team that gets called when the ‘red’ cardiac arrest button above a patient’s bed is triggered by ward staff). They had even assembled a photographic monitor above my father’s bed in the ward to take photos of his heart. I couldn’t see him from all the staff. When I covered my face in shock, I was sympathetically ushered out of the room. Tears are welling in my eyes even now as I recall that day 8 months ago.

They still couldn’t tell us what was wrong, other than to relay a host of figures about my father’s extremely abnormal haemoglobin count, and to ask if that had been the case before. We knew he had had an abnormal blood count, but that was all. My mother gave the staff the contact details for the other hospital where my father had had the battery of tests years before, and they got in touch.  It was that night, while my father was now declining in intensive care, that we were told the true diagnosis of Cold Agglutinins Disease. He required several blood transfusions that night, and had to be transferred to yet  another hospital’s intensive care unit, as the hospital he was in didn’t have the critical care capabilities to attend to him (such as a specialist Haematology Unit).  My mother drove in the back of the ambulance with him, and I took my car. I remember nothing of how I got there. It was after midnight only 24 hours after my father first stumbled up out of his bed at home, and we had been told to expect the worst. We were even asked whether my father and our family had ever considered life  support. We were told that if the blood transfusions and other measures  didn’t help, they may have to induce him into a coma to allow the body to heal, which is a type of life support.

At the second hospital, they had my father hooked to IVs going into arteries in his leg because the regular way (through the arm) was not fast enough. They had him wrapped in bandages to keep him warm, and placed him in a special bed that had heating pads lining it. He then had foil insulation wrapped around  his entire body (the type they usually reserve for mountaineers who get hypothermia). Being an Australian summer, the outside temperature was 39C. It was quite a juxtaposition.  I couldn’t see my father without wearing a face mask or a special apron because his body just wouldn’t cope with any more infection. I felt so removed from him, and from my earlier plans. I had been through a whirlwind of emotions, from the excitement only three days before, looking forward to seeing my boyfriend, who I was in a long-distance relationship with and hadn’t seen in six months, and now to shock and anger because I knew so little of my father’s illness before now.

The Haematologist my father went under at the second hospital was excellent. Although she had never come across a single case of CAD in her career, she knew what needed to be done. Thankfully, my father came out of intensive care within 3 days, but he went into a cardiology ward from there and spent his birthday, Christmas Day and New Year’s Eve in it. The episode of illness had left a strain on his heart and his pulse was hovering at times around 50b.p.m.  Consequently, once he was over the infection, he was transferred to yet another hospital to have a pacemaker put in his heart.

8 months later, we are much more aware of his needs. The first thing we did was change GPs. Perhaps there are only a handful of medical professionals who come across this illness, but I can’t help thinking what might have been spared had we been able to tell the staff on arrival at the hospital that my father has CAD.  Families and patients should and must be properly informed about the illness once a diagnosis is made. Waiting for a situation like ours to arise is too late.  My father now never leaves the house without winter warmers (scarf, beanie and hat).  People do occasionally laugh and it makes him self-conscious, and I do get angry because we went through so much and the have no idea why he is dressed in that way. But then I think life is so precious and I still have my father here eight months after  I thought I may not.

There are some good sides to every story, and mine is not without them.  My boyfriend proposed to me last month, personally travelling here from the US to do so, and to ask my father’s ‘permission’ in person.  All I want now is for my father to be well enough so that he just might be able to travel to the USA (NJ) next year in order to walk me down the aisle. Of course, it will have to be a summer wedding!!!!!!!!! I’ve given my father an incentive to keep wearing his warmers and staying well.

I am glad there is now a support group like yours out there where there is information and understanding.  We are also blessed from being in a warm climate like Australia, although my father is originally from Scotland, so moving here was the best thing he ever did! My father’s haematologist is keeping her eye on him and we have regular contact with a major hospital. Things are good for now, although I currently have the flu, so I can’t give my dad even a hug in fear of infecting him. Small things I used to take for granted I just can’t do anymore.

I have printed some information off on Rituximab, which my family haven’t heard of. My father was treated with Prednisone for a short while, but he is off that now. I don’t know if being allergic to Penicillin (as he is), would rule him out, but I will take the literature to my father’s Dr incase it can be of interest. Not sure if the drug is available in Australia.

Thank you for your time taking to read our story.

Kind regards

Heather Orr

Update from Heather 28 Feb08:

I thought I should pass onto you now that my father is back in hospital tonight after catching a chest infection from me. I feel terribly guilty that I passed it onto him. I picked it up from work (I teach) and it hit me hard enough, so I wasn’t surprised when dad started coughing and spluttering this morning.

We took him straight to the hospital and he has had an ECG, blood tests, chest x-ray, cold agglutinins antibody test, enzyme test, you name it. We took him to Haematology (our local hospital has a specialty haematology unit……how lucky! That’s where he goes every month for routine tests). Anyway, his haematologist wasn’t there today and they directed us to emergency to have him seen by a doctor. They told me in haematology to make sure that the emergency nurse pages his haematologist, so I passed on their request, but the very new doctor in emergency didn’t call the haematologist and dad was in a bed under an air conditioner for four hours with only a sheet over him. When I asked for a couple of blankets to warm him and explained why (not that they didn’t already know that he had cold agglutinins!), the surly faced nurse clicked her teeth and complained.   I blew my top eventually and left the emergency dept. and walked up to the haematology unit myself and demanded to speak to a Dr there. Better than that, they actually called dad’s haematologist who was driving her car and let me speak to her myself. Oh boy, did she see red!! She told me that she was so glad I had called her and said “good on you for defying everyone and having the courage to stand up to the nonsense”.  Within the three minutes it took me to walk from the haematology unit back to emergency, she had already phoned through and ordered that my father be given warmed blankets and put out of the blow of the air conditioner. We got no apologies, but at least  I put the surly nurse in her place (believe me I have nothing against nurses. My mother is one, and many of them today were excellent).  But there’s one thing I’ve realised is how little medical staff are actually aware of this illness. I don’t mind ignorance, but I can’t stand indifference! Last time my father was sick, my father ended up in the ICU and  I am determined that it won’t happen again if I can help it. I do feel especially bad because I put him there with my flu. I’m getting married in October and how I would love to have my father well enough to attend the wedding. 

 I hope that other people who find themselves in my situation will do the same and hold their ground. A couple of warmed blankets might not seem much to a surly nurse, but it means so much to my father

.........My father was released yesterday from the hospital. All my hard work paid off, because the Haematologist ordered my father two blood transfusions over the phone the first night he was in (his count had dropped to 80 from 92 the previous week). You know, had I not insisted they call her, she would not have known my father was there nor heard his blood test results and then been able to do what she did. My dad was admitted under a cardiologist who he didn’t see until the morning after he was admitted (i.e. he didn’t see a specialist at all until after he had had the blood transfusions), and even after 24 hours in the hospital, his past admission file (with all the details of his ICU experience last year) hadn’t been sent to his ward. He was feeling much better the following day, and the Haematologist came down to see my day in the ward. She shook my hand and told me how impressed she was with what I did.

Email Betty if you want to contact Heather, and she will forward your letter

 

Nina Tartakoff's story

Hi. I am Nina Tartakoff, a retired high school counselor, from Fairbanks, Alaska.

I have had CAD since about 1998. It took me a number of years before I was properly diagnosed. It was actually by accident in 2000 that I finally found the proper diagnosis. I had been to my GP and a dermatologist and no blood tests showed anything abnormal and everyone was guessing why I was turning a mottled purple all over when I went out skiing and for winter walks. I have always been a very out-doorsy person throughout the seasons, kayaking, hiking, skiing and biking. Fairbanks is not exactly a great place for someone with CAD!! I hadn't been to the local health fair in a few years but was having other blood work done yearly with my physicals. I thought maybe something would show up that we were missing and went to the Health Fair. Well, sure enough, the lab spotted the problem. I researched the note on the bottom of the lab results by the technician and immediately called my doctor with my diagnosis. She called a hematologist in Seattle to see what tests to run to confirm my diagnosis. Sure enough my titer was and still is 1:4096.

I went through the routine most did of tests, including bone marrow biopsy, to rule out lymphoproliferative diseases. Nobody could find a cause, so here I was turning purple in Alaska and nobody having a clue what to do with me. There was no web site like this and as you all know, not much research and not many doctors with experience with CAD patients. You have to be your own advocate and study as much info as possible. My holistic doc and GP, working together to try everything to boost my immune system and minimize the effects of CAD finally decided it was time to see a specialist in Seattle. While consulting with the specialist, it seemed Rituxan was the only treatment that seemed to have a chance at impacting the disease. So in March 2004, I did my first treatment in Seattle to make sure I didn't have any reactions, and then they let me continue my other 7 treatments in Fairbanks. I did 2 rounds of 4. It did bring my titer to 1:64. I was really excited because I had no side effects with the Rituxan.

About a year or so later my titer was back to where it started. Bummer! We decided to try another round of Rituxan and did another 8 sessions. This time with hardly any change in titer. With the price of Rituxan and unknown long term side effects, since this is a fairly new drug, I am leery to try again. Except for the titer being so high and turning purple, even at my computer when my hands get chilly, my other tests are good and I am able to keep my energy levels and red blood cell counts up most of the time. My hemoglobin is usually in the 14.2 range. Winter is definitely a struggle (which is most of the year in Fairbanks) but with nutritional supplements, good diet and warm weather vacations, I am able to make it through. The disease has been a tough mental battle for me. Bundling up and staying covered enough to not be affected by the cold is nearly impossible. I retired in May of 2006 and am hoping the retirement will reduce my stress load and help the medical condition, along with longer winter vacations in warmer climates. Alaska is such a special place and I have been here since 1976 but is definitely not a good climate for me so I know I will have to face the reality of my new life and move at some point. Huge lifestyle changes.

One CADdy asked about arthritis. I am starting to get arthritic changes in my hands and believe the CAD has contributed to that. Hard to know. I'm 56 and have led a very active lifestyle. All my joints have taken quite a beating!  But I do think that all the cellular changes and destruction that takes place in my hands and throughout my body when my blood hemolyzes, can't be a good thing. I work closely with a Naturopathic doctor who looks at all the systems impacted by CAD and we work on my circulation, immune system, energy levels, liver and kidney function and blood changes. Since my case seems to be basically untreatable, I feel good about trying a holistic approach to managing the disease!

Thank you again for giving people a chance to see they are not alone, to compare treatments, to gain more information and make more informed decisions. I try to look to the bright side and realize I could have something much worse or to have a much more complicated case of CAD, as some have portrayed on the web site.

Nina Tartakoff

nina@tartakoff.com

 

Ann Close's story

I am a retired school teacher, wife of Bill, mother of Will (37) and Janet (33), grandmother of Caitlyn (6) and Julia (2). [2007] 
I am and have always been very active and constantly on the go. The photo is  Bill and I.

I have osteoarthritis in both knees and was taking diclofen sodium for pain relief.  In a regular blood test in the spring of 2005, the lab reported a low hemoglobin count to my orthopedic doctor.  They called me to stop the anti-inflammatory medicine immediately and contact my general practitioner to find the cause of the problem.  After lots of tests, I was sent to Dr. Jerome Bart, hematologist/oncologist for Kelsey-Seybold in Houston.  He was the one who diagnosed Cold Agglutinin Hemolytic Anemia.  He said my red blood cells clump causing the anemia.  He  said cold  aggravates the condition  and for me to wear a hat and gloves in the winter and take folic acid every day He also said to come in every 3 months for blood tests.  I have done well since my diagnosis and continue to do my normal home, church, and baby-sitting activities.  I feel our warm climate in Houston, Texas, has really helped me avoid the extreme low hemoglobin counts.

My knees have gotten to the point that I am going in for surgery for a complete knee replacement. (September 2007)  My hematologist is cautioning the orthopedic surgeon that I must be kept warm.  The hematologist has ordered two units of warmed blood for me the day before surgery.

I really can say that I didn't realize how serious cold agglutinin disease can be.  I also did not realize that it is an autoimmune response that kills red blood cells.  I am glad for this web-site so I can become better educated on this condition.

Ann Close

aclosedeerpark@sbcglobal.net

 

Eleanor Betz story

I am a 71 year old retired teacher.  A native New Yorker, I have been active all my life.  I have 2 children, a daughter, Lisa, who lives nearby and has given us 3 wonderful granddaughters; and a son, Gregg, who lives in Budapest.

My normal routine is to get up each morning and walk 3 miles.  I take a weekly aerobics class and a weekly yoga class. I have always considered myself pretty healthy; no heart problems, low cholesterol, low blood pressure. The only prescribed medication I was on was Fosomax.  I do have arthritis, carpal tunnel, and had a hip replacement 8 years ago.

My first exposure to cold agglutinin was also 8 years ago. I was hospitalized for 3 weeks with pneumonia and severe anemia.  I had numerous blood transfusions and after a week in the hospital, passing out on the bathroom floor, I was finally diagnosed with cold agglutinin disease. I had more blood transfusions (don't believe they ever warmed the blood) and told to keep warm.  Upon my release from the hospital, was not given any info on the disease and thought it was a fluke.  At the time, I was unable to find any info in medical books of on the internet and dismissed it from my mind.

Two weeks ago, I developed a dry cough.  Scheduled for carpal tunnel surgery, I went for pre-op testing.  At the time, my chest was clear. The next day, I went walking and couldn't catch my breath.  Upon returning home, I received a call from my internist, that my blood tests were abnormal. My CBC count was down to 10 and my white counts were up.

 Three days later, I was admitted to Long Island Jewish Hospital and received a liter of blood on Sunday nite.  On Monday, my numbers were up slightly and on Tuesday, they were down again to 8.9.  On Tuesday nite, I received 2 more liters of blood and on Wednesday, was put on prednisone. On Thursday nite, I received my first Rituxan treatment. On Thursday and Friday, my CBC was stable at 10 and 10.1 and I was released from the hospital.

My numbers are now up and I am waiting for medical approval to have my next Rituxan treatment.  Hopefully, that will happen at the hospital on Monday, Nov.5.  Tomorrow, I am scheduled for a CT scan of my lower  abdominal and pelvic areas.

I have suffered with Raynaud's since I was a teenager and now know that it is part of this disease. I have been told by my hematologist that this is chronic and will be with me for the rest of my life. Luckily, we will be leaving for Florida after Thanksgiving and will avoid the cold weather here in NY.

I am now in the process of getting together all my medical records from doctors and both hospital stays.

I am so grateful to have found your website.I felt very alone and did not know where to go for information.  It was also comforting to know that Rituxan seems to be the treatment of choice.  When I first heard that I  was going to have a chemo treatment, it freaked me out.

I live in Valley Stream, New York most of the year; and Coconut Creek, Florida for the winter.

Ellie Betz

eliebetz@ yahoo.com

 

Janice Frishkopf's story

My name is Janice and I am 60 years old. I live in Belmont Massachusetts (a suburb of Boston) with my husband Larry, and our Shetland Sheepdog, Heschy. I am a piano teacher, an artist, and I love cooking and gardening. I have 2 children, 3 step children, and 1 grandson, born this past July (Solly - the piano player).

I was diagnosed with Cold Agglutinin Disease in April of 2004. The months leading up to this were very difficult, involving the sickness and death of my father, and moving my mother (with dementia) up to Boston from New York. That autumn, my neighbor saw me leaving the house and told me that my cheeks and lips were dark purple. At the time, I was so busy with my mother's move into an assisted living home that I didn't pay much attention to it. As the weather got colder, I noticed that my hands were really starting to hurt, turning black, and were sometimes so cold that I couldn't move them.

I thought that I had Raynaud's syndrome and made an appointment with a rheumatologist at Massachusetts General Hospital in Boston. He told me that I probably had Raynaud's but he needed to do blood tests to rule out anything else. That was when my nightmare began. My blood tests came back with reports of high levels of IgM antibodies, and my blood was coagulating before some of the tests could be completed. It was obvious after the 4th set of tests that I needed to see a hematologist. I am twice a breast cancer survivor, so the natural person for me to see was my oncology hematologist at MGH. In the next few months, I had scans which came up with nothing. I also had a bone marrow biopsy, showing no other cancer involvement. My diagnosis was then confirmed. My doctor called it ideopathic Cold Autoimmune Hemolytic Anemia. She told me that if I wasn't going to move to a warmer climate, I needed to figure out how to keep warm. My symptom was only cold sensitivity, not fatigue from loss of red blood cells. The treatment offered to me was Rituxan. Having experienced chemotherapy drugs, I was not going to take it. I really wanted a different doctor to handle this disease, so my oncologist had me see another hematologist at MGH. He was very impatient and not very helpful in answering my questions, telling me that Rituxan is the treatment and if I wasn't going to do it, he didn't want to see me again. He also told me that this could possibly develop into lymphoma.

I then went to the anemia unit at Dana Farber Hospital. The doctor I met with was much kinder, gave me more time, but the treatment offered was the same. I came home feeling very discouraged. I then decided to see a homeopathic doctor. It was somewhat helpful mentally to do this, but after going for around four months, I stopped..

These are what my counts are now. They have not changed very much since 2004. The titer is sometimes lower than this.

Red Blood Cells 3.04
Hemoglobin 11.4
Hematocrit 30.6
Cold Agglutinin titer, greater than 2048.

Last year I finally found a hematologist at Massachusetts General Hospital who gives me the time I need and is very understanding and supportive. I see him twice a year for blood tests. And to talk.

For me, the worse part of this disease is the limitation that it has placed on my life concerning my mobility and many of my interests. I am legally blind and am unable to drive. In the past, I walked to many places and also took public transportation. I can no longer stand outside to wait for the trolley in cold weather (now below about 55F), and it is very difficult to walk far in all of my layers of clothing, not to mention the comments I sometimes get. My husband and many friends help me, but I feel even more limited than I did before. Cooking and gardening have become quite challenging. My hands are always turning black and hurting but I will not give up these activities. On the positive side, I have made progress with my artwork, and last January I worked with a friend to design my first website.

I would like to end by thanking everyone who has contributed to this site. Reading all of your stories has been extremely helpful to me. The isolation I have felt over the last few years has increased, but reading your stories has made me feel less alone.

Janice Frishkopf

JSF522@gmail.com

 


2008 starts here


Cécile’s story

I am 55; I live in Mayenne, a small town in western France; I am married with Didier and we have two girls and two grandsons. I work in a bank, full time.

As far I can remember, I did anaemia because of a lack of iron in my youth, but my haemoglobin was round 14 in my twenties.

Since a bronchitis end of 1999 the months leading to my first crisis were difficult –I was so tired! During the cold night of the 6th of March 2000, an acute pain in the chest and in the back awoke me suddenly, and I entered in local hospital. Only morphine could alleviate me. My haemoglobin was round 9, with less than 3 millions of red cells. I was pale, with jaundice, and weak. Some weeks later my illness was diagnosed Primary Chronic Cold Agglutinin Disease in Angers University Hospital where I had been transferred. No treatment was given, only folic acid daily and advice of protection against cold. I have never been transfused.

Other episodes of such pains in the chest, in the back, including the arms led me till 2005 to hospital, with all the tests and check-ups, but doctors could not certify any direct  relation with CAD, or  with any other illness!  I stopped working several periods of some months, because of my weakness. They were related with a decrease of my figures.

In 2000 I tried Danatrol, without response, but side effects. In 2001 I tried Rituximab, efficient for 18 months; I was back at 13,5 and 4 millions! In 2004 one doctor wanted to put me again on Danatrol  (inefficient for us) because of  a lower price than Rituximab! In 2005 another doctor in Rennes University Hospital accepted to put me again on Rituximab; I had only a short response. Facing  failure I accepted to take Interféron; my numbers fell to 8,2, and 2,6 millions! Another failure!

At the moment, my numbers are between 10 and 11, with 2,9 red cells; I still work waiting for a retirement scheme to come. I am still haemolysing, but apparently compensating with my folic acid daily. I have also herpes outbreaks. I only fear driving 60 kilometres  in winter for my job. I live under an oceanic climate, with frost and snow in winter however, and rains, fogs and humid winds more than I would like; so far I have only a slight livedo on my legs. I appreciate a lot a personal spa at home with hot water, as I don’t live in a warm country, to cope with my chronic tiredness, and lack of energy.

 Fortunately, one of my three doctors is very supporting and understanding, and ready to every initiative to help. From 2000 search on internet, contacts with doctors and patients (2 women in France, through a national association) could help me a lot.

Congratulations to you all for your work, and thanks for the support you give us in the website to keep hope and to struggle. I give my address for any contact to help.

Cécile POIRRIER-GUILMIN

didier.poirrier-guilmin2@wanadoo.fr

 

Gloria's story

I am a 66 year old female, born in Indiana, but lived most of my adult life in Southern California.  Moved back to Indiana in 1994.  During an annual physical in 2000, a hemoglobin of 10.8 was noted.  My family doctor referred me to a hemotologist who started tests in May with a Coombs test positive for hemolytic anemia and an elevated titer of 1.256.  By June hemo had risen to 11.8.  Problems didn't surface until December, when hemo dropped to 8.8.  Went up somewhat after taking prednisone, then dropped again.  Started on cytoxin, and soon after hemo went to 3.  Went directly from the doctor's office to the hospital for the first of two transfusions.  After this, two shots of procrit,  more blood tests at the Indiana Blood Center and Indiana University Hospital and agreement between the now three doctors of a CAD diagnosis.

Since that time I have managed the CAD by staying warm.  Two years after diagnosis we decided to spend January and February in  Florida.  My hemoglobin has consistently been in the 10's during the winter and 11 or 12 in the summer.  In October of 2007 tried rituxan, four injections, but there was no improvement.  We aren't going to Florida this year, but will spend a month in California.  It isn't quite as warm there in February, but a lot warmer than Indiana.

Gloria Storey

ndstorey@sbcglobal.net

 

Inge's story

Here are a few words about my last years.

I am an 81 year old Danish woman, My husband died in 1998 after a long period of illness. In January 1999 I went for a small walk near my house north of Copenhagen, I returned after 15 minutes and got a chock. My face was totally black. My doctor had never heard such a story. She did send me to a specialist in interne medicine. He took at lot of blood tests and late May he had the result , CAD. He wanted a bone marrow test, but the hospital refused to take one, so he couldn’t find the cause.

As I couldn’t  enjoy the environment any more I moved to an apartment in Copenhagen. I then changed Hospital and doctor. Here they started  a bone marrow test showing a Non Hodgkins lymfom.  I was treated with Leukeran several times and one time with something I don’t remember the name of. None of them helped. In October 2002 they started a test of Mabthera in Denmark. It wasn’t accepted then in Denmark, but a doctor in Herlev wanted to try it on CAD. I agreed to join. The result was e better blood percent. All the other problems were still there.

If it is a little cold ore windy my face, toes and fingers gets black and it is pain full in several hours. Normally  I go home immediately, but if I stay out a little longer I get blood in the urine. It is really depressing. I have given up skiing with the family, walking in the forest, travelling North and worst of all playing golf. Sometimes I can play some holes in summertime, but I have also problems if it is too hot.

 In September 2007 my doctor heard about the research in Norway. So I started with Mabthera  and Fludarabine. But I got a terrible infection and I couldn’t see myself all the summer near the Hospital , so we stopped the experiment. Last week we started with Mabthera again, 4 treatments are planned. This time my blood pressure fall and my temperature raised, but I will go on.

It has been very interesting reading your website with all the stories. It has given me the idea to try a new treatment with Mabthera . It looks like it has helped some of your people.

If you want more  informations, please write me.

Inge Andersen

i.b.a@email.dk

 

Barbara's story
 

Hi everyone! My name is Barbara Plavecsky.

I am 42 years old. I am a Realtor in New Middletown, Ohio. I study Goshin Jutsu karate at the Crystal Dragon Family Martial Arts Center in Columbiana, Ohio. I believe that this is one of the reasons that I feel great. Karate keeps you (and your blood) moving and keeps your mind on full alert. Everyone there is fantastic too. If anyone is interested in taking karate, you may want to try Tai Chi. Tai Chi involves circular body movements and a lot of breathing. It is very relaxing.

I first found out that there was something different about my blood when I was 16 years old and had been admitted to the hospital for Staph infection in my throat. Every time that my blood was drawn the nurse would come back in and tell me that they needed to redraw blood because the platelets clumped in the tube.  I have had many surgeries; the blood work always needs redone. No actual problems with the surgery itself though. I have had 2 children and two miscarriages (probably because of the blood problems). Last year, Feb.14, 2007, I had a spinal fusion. After the spinal fusion I got really sick, I was anemic and was tired all the time. My pulse rate at rest was at 129 beats per minute. I also got an infection in my gallbladder and went to the E.R. on Feb. 23, 2007. I felt terrible.

Over the next few months I was at the doctor’s office or hospital very often. My primary care physician sent me to a hematologist near us, Dr. Garg, to see if he could tell us why all of my blood work was off. What was supposed to be high was low, what was supposed to be low was high and my platelets were clumped. Dr. Garg was sure that he could get an accurate reading on my blood. But, even in a citrate tube, the platelets clumped. We could get counts on RBC and Hemoglobin; they were low, but not really bad. No counts usually show for platelets or white blood cells (Unless I am really sick, then white cells will be high. Platelet count must be done manually). Neither the titer test nor the thermal amplitude tests were done. There were a few other tests that Dr. Garg did and then he told me that I have CAD. He ruled out the other causes for the platelet clumping. I have had CAT scans of all of my organs; all are good except for a kidney stone.

I recently went to another hematologist at UPMC Hillman Cancer Center in Pittsburgh, Dr. Bontempo. I told him what had happened and brought all of my blood work results with me for him to look at. He took 13 vials of blood and ran his own series of tests. I do have CAD, I also have lupus anticoagulant and the platelet clumping is due to the CAD. I have the following antibodies: Beta 2 Glycoprotein I, IgM and IgA. Also, Anticardiolipin IgG Ab and IgM Ab. Hexagonal Lipid Neutralization: positive.Cold agglutinin titer 1:160. ANA titer 1:160. There are a lot of other things in my blood that should not be there. Dr. Bontempo was telling me “You have all of these things and you don’t have any symptoms. You are an anomaly.” He said that we could get rid of the antibodies with chemotherapy, but that might trigger an autoimmune response and we would have to deal with the clumping issue and lupus anticoagulant. I believe that the right thing to do at this time is to leave it alone. I feel great! It is hard to believe that I have ninja antibodies inside my body.

Barbara Plavecsky

x_ringshot@yahoo.com

 

Rod's story

  I have CAD. I am 72 years old as of yesterday and was told I had a problem with my blood during a routine physical about 20Yrs ago. Approx 10yrs ago, after an overnight kayak trip to an outer island with my youngest son which resulted in a 6hr return paddle in a minor storm,  I became very tired, shivered uncontrollably and had very discolored extremities. The next day I was scheduled for another routine physical with the VA and realized then that something was amiss. The lab techs, after drawing blood for the third time with poor results, started to peek out the doorway at me. Consequently, I was give multiple tests to determine my problem and eliminate other possibilities.

 I continue to be monitored by the VA, a specialist in Portland, Me., and a specialist at Dana-Farber.

 I also continue to lead a fairly active lifestyle although I have had to give up skiing which has been my passion and major winter activity since age five. I still want to ski and am still able but the amount of clothes and gear needed and the possibility of getting stuck on a lift in the wind deters me. At least the kids enjoy the condo.

Currently my numbers are typical, low RBC, Hemo, Crit and high Bili. My only intervention now is Folic Acid and my only recommendation from my Drs. is to move to a warmer climate. They say I am quite fortunate to be as healthy and active as I am. I certainly agree.

Thanks again for your site.  If my situation deteriorates, I and my Drs. will have a source of valuable information to depend on.

Rod Coomer.

rcoomer@maine.rr.com

 

Mary Lou's story

My name is Mary Lou Lydecker.  I live in North Royalton, Ohio. The photo shows my family, and I am in the center.

I was 48 when I was first diagnosed with Cold Agglutinin Disease, and I am now 56. When I was first diagnosed in September 2000, I searched the web for a support group, but there was none.  So when I recently stumbled upon this CAD support group site, I was thrilled.  Finally, there would be a group of people who truly understood this bizarre disease and the complications that went along with it.   Here is my story.  (Sorry, it's long.)

I was an elementary school music teacher in Strongsville, Ohio.  It was late February 2000, and blistery cold in the Cleveland area.  I had a cold and sore throat.   The 5th/6th grade choir had just finished rehearsing.  The choir met before school began, 7:30 am to 8:30 am, due to time limitations and conflicts during the regular school day.   Since my next break wouldn't be until 12:30 or lunch time, I ran to the lady's room to "powder my nose," so to speak.  When I turned around to flush the toilet, the bowl of water was a deep, dark red.

Since I had undergone a full hysterectomy in 1993 and a cancerous but encapsulated lumpectomy in 1996, I panicked, thinking the worst.  I told my principal and school secretary to please call a sub for my classes and I raced to my internist.

Unfortunately, my doctor refused to see me even though I stressed to her nurse and assistant my need to see and talk to her.  Instead, the nurse ran back and forth between me and the doctor acting like a middleman relaying my symptoms and questions to the doctor and then returning answers and a diagnosis to me!!  The nurse told me that the doctor said that I had a bladder infection, that I shouldn't worry, and prescribed an antibiotic -- all of this without taking a urine specimen, blood test or seeing me!!  I questioned this diagnosis and after another couple of "back and forths", a urine specimen was indeed ordered with a promise that the doctor would call me later that night with results and to see how I was.

When the doctor didn't call me back by 10 pm that night, I called her emergency number.  She called my fears "unfounded" and laughed at me for being so worried.   I told her that I had never had a bladder infection, had no pain, and was indeed concerned about having something other than what she diagnosed and begged to see her.  Instead, she told me that by the end of the next day, the blood should disappear and pain ease up.  (HELLO!!  DID YOU HEAR ME?  I HAVE NO PAIN!)

When I still had discolored urine two days later, she upped the milligrams of the antibiotic and told me to rest.  I was out of school for two weeks and slept most of that time.

Since I was an elementary music teacher, there were too many music programs to prepare with the children and I needed to return to work.  So after two weeks, I went back to school and promised myself to change doctors over the summer.

As luck would have it, a satellite campus of the Cleveland Clinic opened up in Strongsville that summer.  I had no medical history papers with me when I walked into my first appointment in late August.  As soon as the doctor saw me, and before I had a chance to say anything, he exclaimed that I was very jaundice and that he would order some blood tests.  He mused that there were so many different blood tests, and that if these didn't show up something, he would order more.   He knew nothing of my experience in February, but  just by looking at me realized that something was causing my jaundice complexion.

Within the same week, I ran out of my allergy medicine and needed a renewal prescription.  Since I was a new patient, it was the Cleveland Clinic's policy that a doctor had to see a patient before writing any script.

Another doctor in the practice saw me with my new Cleveland Clinic medical papers in hand.  He immediately said that he concurred with his partner that I was indeed very jaundice and that he was ordering more blood tests.

The next evening, a Friday, I received a call from this doctor stating that my hemoglobin number was a 6.8.   He wanted me to come in the next day for another blood test to make sure that the number was correct.   I asked if I could please come in on Monday before school since we had both a wedding in Columbus and an Ohio State football game in which our son was marching for the first time on Saturday.  "OK," he said, "but, you must not dance or consume alcohol at the wedding.  And please don't over do it."

I noticed how cold I was all during the wedding.  I just couldn't get warm.  But the biggest hint that something might be wrong, came when I started climbing the stairs at the Ohio State stadium.  I would climb about 5 stairs and have to stop to catch my breath.  My husband was a nervous wreck trying to help me but also worrying that we'd miss our son's first "down the ramp" entrance in the Ohio State Band.

Monday, I had my blood drawn at 7 am before going to school.  At 9:30 pm that night, the phone rang.  I was already in bed, exhausted from the weekend and the day of teaching.   After taking the phone call, my husband gently woke me up saying that the phone call was from the Cleveland Clinic.  My hemoglobin was dangerously low and we were to drive directly to the downtown Cleveland Clinic emergency room.  The staff would be ready for me.

The staff were amazed when I walked into the emergency room on my own and was talking lucidly.  Since my hemoglobin was so low, attempts to draw blood were difficult.  One set of nurses tried 9 times and were unsuccessful before the doctor on call was able to finally draw a vial full.  I was told that my hemoglobin was a 4.8.  I was admitted to the hospital.

The long and the short -- I was diagnosed within 24 hours with cold agglutinin, thanks to Dr. Alan Lichtin, a hematology specialist at the Cleveland Clinic.   He told me that cold agglutinin disease often either accompanies a cancer or a tumor, or is the result of a secondary viral infection that occurs due to an undiagnosed mono or pneumonia (hmm - February's real diagnosis??).

After talking to me and watching my every movement closely, he decided to:

1)     Not perform a transfusion since I appeared to be non-symptomatic and not in any apparent duress,

2)     Send me home to recuperate as long as I promised not to do ANYTHING but rest,

3)     Have me come in for tests every other day (bone marrow, MRI, HIV, X-rays, etc.) to rule out cancers and tumors, and

4)     Continue to take blood tests to monitor my hemoglobin and other vitals.  A transfusion and hospitalization could still take place if warranted.

Thankfully, the tests showed no cancers or tumors.  I was put on a high dose of prednizone, told to keep myself warm, to wear a hat and cover exposed skin if the temperature was below 65, to climb stairs once a day, and most of all, to rest. I was not allowed to go back to my teaching position until my hemoglobin was at least a 9.2.

During this time, I craved ice drinks and ice cream.  When my hemoglobin numbers weren't improving, and I assured my doctor that I was keeping myself warm on the outside, Dr. Lichtin quizzed me about my eating habits.  After a lecture on the importance of warming the core as well as the outside of my body, I was told to stay away from all cold drinks and cold foods.  Not surprisingly, the numbers began to rise.

A secondary trigger to my disease is the common cold.  My body cannot fight two fronts.  As an elementary music teacher exposure to colds and other viruses are a daily occurrence, and so I found myself in and out of school with many cold agglutinin flare-ups.  Dr. Lichtin and my family members all recommended applying for a disability retirement.  In February 2002, I was granted a disability retirement from my teaching position.

Since retiring, I have mostly been stable with my hemoglobin being around 10.6 - 11.4.   I still catch the occasion cold and then my hemoglobin plummets.  I can feel when this is happening, know what to look for, and call Dr. Lichtin immediately.   Dr. Lichtin has told me that cold agglutinin disease can also precede a cancer or tumor and so he monitors me closely.  I am to call him if I notice any changes in my body.

So far, taking prednizone when I have an “episode”, keeping warm, and rest has worked the best for my condition. I also take 5 mg of folic acid each morning. I have not had any chemo treatments.  The prednizone treatment tapers as my hemoglobin numbers rise.  I'm usually off the medicine within 5 - 6 weeks.

We have a sauna in our basement for those times when I feel chilled and the Cleveland winds and snow blow.  I have several long wool or down coats, loads of hats, scarves, gloves and boots.  I favor "cuddle duds" long underwear, and the layered look.  (I often feel like a bag lady!)   I've also rented condos in Florida for the past 7 years during January, February and March.  My husband has two years until retiring from his teaching position.  We just bought a condo in Ft. Myers, Fl. and are hoping to be snowbirds when he retires.

 Mary Lou Lydecker

 filiboom@aol.com

 

Barbara's story

My name is Barbara Southall, and we live in Burlington, Ontario, Canada. I am married to Paul, have 4 children, 6 grandchildren, another is expected in November and have 3 granddogs.

I am 69 about to be 70 in November.

December 2007 I felt pain around my mid section. I took medication with ibuprofen. Felt some relief.  It was at Christmas so I pushed myself.  By the Jan. 4 2008 I had severe chills, the starting of diarrhea and from there went down hill. 

On Jan 7, 2008 my family took me to the doctor.  There was not a bed in the local Hospital.

Went home, passed out, family called 911 and went to the hospital.

Had various tests.  The final diagnosis was anemia.  The Cold Agglutinin Antibodies were present.  With a hgb of 83 I went home. 

Had blood tests weekly, saw the hematologist on a regular basis.

In May I decided to look up Cold Agglutinin on the Internet and was amazed to find your website.  I immediately started the B5, tried to limit/eliminate ice cream, cold foods.

My blood count went up, after the introducing of B5 until I indulged in the cold foods on vacation.

For me I try to keep it simple and avoid any cold situations, cold foods like the plague, try to eat foods high in iron.

Keep my body inner core warm.  I always carry a jacket.

I can tell when my hgb is low by the soreness in my knees and hips. 

I would be pleased to be contacted by anyone.

Barbara Southall

barb.southall@sympatico.ca

 

Roberta's story

My name is Roberta Franklin and I live in south Florida. I was 67 when I was diagnosed with cold agglutinins in December 2005. I was having acute bowel problems which I have had before and went to the ER in pain.  I waited 6 hours before they brought me back to see a doctor.  The ER doctor ordered blood tests among other things and my blood count was found to be dangerously low.  They decided I should be admitted and the next day a hematologist was called and his partner Dr. Gersten was consulted.  Before releasing me they gave me 2 units of blood.

Dr. Gersten had encountered the disease before and was familiar with the standard treatments.  I immediately made an appointment with Dr. Gersten who said I should have a bone marrow test to determine if I had Non Hodgkins Lymphoma. He did it in his office and  luckily I do not have that.  On December 8 and 29 I had Rituxan and VIncristine, a cancer drug and on Dec. 15 and 22 only Rituxan.  Each treatment takes 4-5 hours  But after 2 treatments my blood was so low 6.1 and I was feeling so bad that Dr. Gersten sent me from his office to the hospital for another transfusion.  I had two units of blood which brought my blood up to 13  immediately.  The doctor was amazed.  I was told to take folic acid once a day, which I have continued taking.

The Vincristine not only made me loose my hair but my singing voice.  I went to a throat specialist who told me my vocal chords wouldn't close, therefore I could not sing any high notes.  I went to a speech therapist who deals with singers and was told to do voice exercises for months.  It took about 6 months for my vocal chords to become normal again.  Very scary for a singer.  

At first I saw the doctor once a month, then 3, then 6 months, then a whole year.   I was feeling well for approximately 2 years.  I should never have waited a year and never will again.  My symptoms returned and I had 4 treatments of Rituxan again in 2007, no Vincristine this time.  My hemaglobin took months this time to reach 13 where it has stayed.

Roberta Franklin

msfsinger1@yahoo.com

 

Joe's story

Age 90 in 2008

I lived on Long Island, New York, for 64 years and retired with my wife Connie, now age 84, to Lake Hartwell Georgia in 1981. When I was 78, in 1996, my doctor discovered that my hemoglobin was down to 8.5.  After many additional blood tests and a bone marrow biopsy, I was informed that I had CAD and was treated with Procrit shots.   My hemoglobin gradually rose to 13.6 after I received 3 or 4 injections of 10,000 units, 3 x week.

Note the "Driver" - on the seat, not the one in Joe's hands

Joe and Connie

Today, I lead a very full and active life playing golf at least 3 times a week.  I shoot in the high 80's and low 90's.  Also, I do a lot of swimming and boating and even ride my jet ski boat.

I find having CAD is more of an inconvenience than a health issue.  I’m still taking Procrit and my VA doctor, Dr Julian Jacobs MD, FACP, wants me to keep my hemoglobin in the range of 10.5 - 11.5. He believes that by keeping it at that level, as recommended by the FDA, there's less risk of a stroke or heart attack. I'm also taking Plavix, a blood thinner, since I have had some TIAs and possibly a mild stroke 10 years ago.

I keep my house at 80 degrees (26 degrees to some of us) winter and summer and I'm never without sweaters and jackets whenever I travel or visit friends.

It is amazing that of all the doctors’ patients, including those of at least 6 hematologists with whom I have spoken, I was the only one with CAD. That includes my VA hospital doctor in Atlanta who is a Professor of Medicine Emeritus for the Emory Medical School. I am very fortunate to have him as my blood doctor. I see him at least 4 times a year and spend at least an hour each time. He supplies me with the Procrit each month for a fee of only $8.00 co-pay. It sure helped being a World War ll veteran.

After all these years I finally found a web site for people with CAD. I’m grateful now because I have a way of communicating with other CAD people and it’s a worthwhile effort even though I type with one finger. For the last 10 years, I thought I was the only one in the whole world with CAD.

Joe Sergio

jcsergio@hartcom.net

 

Steve's story

 I am 45 years old and live near Burlington, North Carolina. I grew up in Central Pennsylvania on a cattle farm. I spent my winters feeding cattle, breaking ice in the water toughs and used all my free time for hunting and trapping. I graduated from Penn State with a degree in Agricultural Sciences and Economics. I moved to the eastern shore of Maryland to work in the commercial poultry industry. I mostly worked in the grow-out departments. Starting out day old chicks require the houses to be heated to 90 degrees F, so the chicks will start growing as they hit the floor. Gradually we bring the house temps down to 70 degrees over a 6 to 7 week market age. You can see that someone in the poultry industry that works grow-out get accustomed to warm temperatures. The processing plants are just the opposite, the plants are very cold. I worked in a processing plant for three years before I was having problems with CAD.

I noticed about 13 years ago when I was returning to Pennsylvania to go deer hunting, my hands and feet were cold all the time. I thought that I had got adjusted to the warmer weather in eastern Maryland, and wasn’t tough enough to take the mountain’s chill anymore. That same year I joined the blood bank at work. The first time I gave blood, the blood coagulated in the bag. The phlebotomist’s told me the anti-coagulate in the bag must have been defective. About sixty days later I went back again to give blood. The same thing happened. I went back about three or four months later and the same thing happened. A few weeks later I received a call from a blood bank doctor advising me to go see my doctor. The only time I ever saw a doctor was for stitches or x-rays to see if broke anything on a few occasions and for tetanus shots for puncture wounds and cuts if it’s been more than seven years between shots. Other than that I didn’t need a doctor.

I set up an appointment to see a doctor and she referred me to a hematologist. That’s when I spent the next year getting test after test to determine what I had. After Reynaud’s Syndrome was ruled out, I was diagnosed with CAD. The hematolgists advised me to stay warm, take an aspirin a day and stay warm. The next winter I couldn’t stay outside 2-3 hours at a time until I had to get in my truck, to the heat on, and warm up for 20 to 30 minutes. When I went to the gym to exercise I would have sweat pouring off me while I played racket ball, and at the same time my nose would be blue and my hands and arms would be getting numb. Went I lifted weights the cold steel would pull the heat out of my hands. I had to start wearing gloves. In spin and kick boxing classes my nose and cheeks would get blue.  I did this for several years, but it got more painful, when it was real cold my hands, feet and face went completely numb, and on occasion I couldn’t talk because I could move my face muscles. If I got caught in a rainstorm in the winter while riding one of mules I would nearly freeze. When I would start thawing out, it felt like sand running through my hands and feet until they warmed up and the blood was flowing again. After I got warmed up I was back out in the cold to do it all over again. I went back to my hematologist and told her something had to be done because I couldn’t stay warm outside. I asked her for blood thinner and she told me blood thinner would not help. She advised me to wear warm clothes, stay out of the cold or move south. I asked her for a referral to John Hopkins. I figured someone up there could cure it.

When I went to Johns Hopkins, I was educated on CAD. The doctor did recommend Rituxin as a treatment. Well I agreed to take the Rituxin treatments and get back to my normal life. After driving to Baltimore for two and a half hours, I received my first treatment. The next day I wanted to see if I was “cured”. I got a bowl out of the cupboard, put some water and ice in it, and added salt to lower the water temperature. Well after about 15 minutes my fingers still got blue and started hurting. I tried this same test after the next three treatments. My dang fingers still got blue and started hurting. That’s when I got some more education about CAD that there is no cure and only a chance the treatments will have any effect on reducing the effects from CAD. Well the next winter I still got cold. I asked the doctor from Johns Hopkins what is the next treatment.  Again I got educated on CAD and prednisone might be an option but it had many side-effects when it was taken for extended periods of time. We agreed to start it early fall and he would wean me off of it late in the spring. I did do my research on prednisone, and didn’t want to stay on it continuous. We tried it for two winters, and I kept asking him to increase the dosage because I still couldn’t stay out in the cold as I use to before I had CAD. He wouldn’t allow me to increase the dose above 80 mg per day. Also about three months after starting the prednisone I asked him “ when am I going to start bulking up, I’ve spending a lot of time doing extra weight training, and I should be as big as Huck Hogan by now, are you sure I getting steroids?”

Well I got another education, this time on steroids and prednisone. Anabolic steroids are used to build muscles not prednisone.

Well after two winters of prednisone, that wasn’t going to help the CAD without the chance of screwing something else up in my body. This ole country boy is about as hard headed as the mules I ride and about as stubborn as one my hounds dogs when it’s time to quite hunting and head home but they want to keep these nose on the trail until they tree something.   I was offered an opportunity to transfer to North Carolina and even get a promotion. Well nothing back in Maryland was holding me back, I was divorced twice, and had a huge falling with my girlfriend six months prior. So I sold my mules, my horse, most of my dogs, and headed south

.

I've been in North Carolina just over two years. The weather is warmer here. But I still get cold in the late fall and winter. If it’s below 60 degrees I can’t stay outside more than about 30 minutes. I don’t remember getting cold this easy. I’ve decided to give Rituxin another try. I had my first treatment yesterday. I think I’ve finally given up on being able to take the cold again. But I hope I can stand to be outside if it stays above 50 degrees. If not maybe south Texas might be an option in a few years.

I discovered the CAD back in the spring. I read some of the stories. When I saw the picture of Miss Nina with the snow on the mountain and the ice in the water, I did email her and asked her a few questions. I figured if she can live in Alaska, I hope I can stay in North Carolina.

 I would love to talk to any of ya’ll about your experiences and or advice.

Steve Hearne                  

steviehearne@hotmail.com

 

Pamela's Story

Hi Graeme. Thank goodness I have found your website.  My name is Pamela Bedford and I currently live in Perth, Australia.

I have been diagnosed with cold agglutinin disease a couple of years ago, and have had all sorts of battles.

Your website is great, gives me encouragement, and I even print it out and take along with me to the doctors so that they also can understand CAD more.

I have been in contact with Thio Gim here in Perth and he has been a tremendous help already.

I am 56 years, and have just had to give up my job with the Agriculture Department as a Personal Assistant to the Director of Animal Biosecurity, a job I loved very much.  I have my house on the market in suburban Perth and I am hopefully moving to Carnarvon up the north of Western Australia for warmer weather and where my sister lives.

I have just had a cat scan, and now I have to have a Bone Marrow Biopsy so I am on that bumpy road that no doubt many of the CADdys have worn before me.

My CAD was undiagnosed for many years and I thought I had chronic fatigue.  The doctors told me it was all in my head, that I had had a bad divorce, that I was a single mum, depressed and so on.

One day I went to the Doctor for some more tests, and the titre test came back a little out of range.  The Doctor said not to worry and sent me back to work.  Luckily for me, my boss was a very smart ex RAF lieutenant and demanded that I go back to another Doctor as she thought something was wrong and if the test says its out then it needs to be looked into.  Thank God she did as the next Doctor I went to sent me off to a blood specialist and there it was........ CAD!!  After all those years. I sat down and cried.

I have now spoken with many people regarding CAD to try and get more awareness.  People are amazed as to what has happened and just yesterday I was sharing information with the radiographer who was doing my cat scan.  She had never heard of CAD, so she got a rather short lesson.  She is from England and said you would have to dress in one of those inflatable suits to survive the cold.  I laughed and said funny there is a picture that looks like that on the website.  I am sure she will follow up herself also.

I have lived in Auckland, so how on earth do you survive the cold in Christchurch Graeme?!!!

Anyhow, after all that,  I hope I can be part of the CAD group and keep in contact.  Thio has been such an encouragement already and its so nice to share our good and bad stories and learn from each other.

Pamela Bedford

carnarvoncarpets@bigpond.com

 


2009 starts here


Judith's Story

Hi, my name is Judith Hubbard.

I recently contacted Betty about starting a message board where those with CAD can communicate in a group forum. So, The CAD Chatter group was born.

I am a 45 year old mother of two. I have been married 23 years to a great man, Brian. We have two grown children, and live outside the Fort Worth, Tx area.

I was officially diagnosed with CAD in 1998. After reviewing my health records, symptoms go back to 1983. However, it was in the fall of 1998, when I got strep throat, that things really kicked into gear. The prior year I was told that my thyroid was shot and that I had mono. I had already received a fibromyalgia diagnosis five years before that. Okay, so it would seem that my immune system ain't so great!

My official diagnosis was followed by two weeks in two different hospitals and a stroke, which messed up my vision for several months, and my entire left side is numb to this day. I have had 3 or 4 other "small" stroke events but their effects were minimal. Although my blood level was down to a 4.7 at the time of my stroke, I was not transfused as my bone marrow started to do its job.

I used to pay closer attention to the numbers, but really don't anymore. I pretty much go by how I feel. I do have a daily medicine regime which addresses thyroid, fibromyalgia, peripheral neuropathy, Raynaud's and opthalmic migraines.

Other than the CAD, I try to enjoy life despite the limitations. I live in A/C country, and it is hard to go anywhere without getting
cold. I generally try to escape every year to somewhere tropical.

I was so happy to have finally see a website devoted to CAD. When I was first diagnosed there was nothing. I look forward to getting to know you all and hearing how you cope with this stuff as it seems to be a real roller-coaster ride for me.

 Judith Hubbard

hubbub.1218@yahoo.com

 

Valérie's story

I am from France and have been diagnosed with Waldenstrom's macroglobulinemia in 2005.
The diagnostic has been confirmed by bone marrow biopsy. My bone marrow produces IgM Kappa light chains.
I have a secondary CAD (Cold Agglutinin Disease) linked to IgM Kappa as well as a Coombs Positive Hemolytic Anemia.
My oncologist (Mr Decaudin, Curie institute in Paris) and his colleagues do not have much experience on that particular rare form of WM.

I am interested in hearing from other patients or experts, who may have experience on this specific disease, and in appropriate treatment possibilities and results.

In addition my mother has very similar WM cancer. She was diagnosed in 1999.
She presents a renal insufficiency : IgM Kappa light chains precipitate on the glomerular basement membrane forming deposits that occlude the capillaries.
She does not have
Coombs Positive Hemolytic Anemia.
In her case the only treatement that have given good result so far (remission during 4 years) is chlorambucil associated with prednisone.

Here are the details of the particular symptoms I have:

  •         Tiredness
  •         Severe anaemia (hgb between 8 and 9g/dl blood cells)
  •         Night sweats
  •         Pain and damaged in the joints
     

But I do not show the following symptoms:

  •         monoclonal IgM peak in electrophoresis analysis ---> my IgM are 500mg/dl with no visible peak
  •         Increased size of the spleen, the liver, and some lymph nodes --> not visible by Scaner
  •         A tendency to bleed easily and to bruise easily (too few platelets)
  •         Headaches and dizziness
  •         Various visual problems
  •         Pain or numbness in the extremities
     

As I am positive at direct coombs test results. That imply Fludarabine treatment is not recommended for me because of hemolytic risks.

Treatment history and results:
No symptom 2005 - 8/2007 - anemia started in Aug 2007 ( Hb 9 to 10g/100ml)

  •                 11/2007  ( Hb felt < 9g/100ml) --> 3 injection Rituxan :  with no effect
  •                 3/2008 prednisone 1mg/kg with no effect
  •                 6/2008 to 11/2008 RCVP (Rituxan, Cytoxan, Vincristine and Prednisone) with very some improvement of Hgb (                  around 10g/100ml ). My mother has also been treated with this protocol with no result.
  •                 12/2008 : wait and watch my Hgb are stable around 10g/100ml

       The next step for me should be chlorambucil.

Thank you for your help.

Best regards
Valerie P Debaix
(France - Paris)

valerie.debaix@med.ge.com

 

Lael's story

I am Lael Van Riper, 67, living on a farm in Montrose, Colorado.  This high-country desert is less than two hours drive from three ski areas. Our valley has an arid climate, temperatures occasionally reaching highs above 100 or lows of below 0.

For me CAD is as if I were putting together a jigsaw puzzle that has no picture to guide me.  I don’t know how many pieces are in the puzzle, and someone gives me the pieces a few at a time over the years, occasionally throwing in pieces that belong to some other puzzle.

The first piece of the puzzle I received over 50 years ago.  My pediatrician told my mother that I should be protected from the cold.  I had a marker in my blood that indicated I would be susceptible to cold and to arthritis. 

I have had restless leg syndrome since childhood. The NIH web site says, “People with low iron levels or anemia may be prone to developing RLS. Once iron levels or anemia is corrected, patients may see a reduction in symptoms".  When I took the blood test to get married, I found that I test a false positive on the syphilis test. In my late 20’s I tried to become a blood donor.  I was refused because of the false positive that I test and because as my blood cooled the red blood cells "clumped".

In the early 90’s I began to spike high fevers, have hallucinations, then a day free of symptoms and back again.  I grew more and more debilitated.  I tested a high titer for rheumatoid arthritis and was treated for RA until the day I was put into intensive care.  There, a bone marrow test revealed that my bone marrow had ceased producing red blood cells.  A second doctor diagnosed the illness as Borellia, relapsing tick fever.  (There is another strain of Borellia that causes Lyme Disease.)  A round of tertracycline cured the disease, and my bone marrow resumed production.

Sometime after that I was told that I had cold agglutinins that were causing my red blood cells to agglutinate when cooled.  Since they were giving me few problems, I forgot about them.

In 2005 I began to be fatigued, have plantar fasciitis (an inflammatory disease of an area in the foot that has a limited blood supply), eventually had heat exhaustion.  When I finally saw my own physician, she took one look at me, declared I was severely anemic, and put me in the hospital.  There, another bone marrow test revealed that I was not producing sufficient red or white blood cells.  I was given four units of packed red blood cells.  A distant lab looked at my blood and said I, almost certainly, had leukemia.  My spleen was swollen and what red blood cells my bone marrow was producing were large and misshapen.  By the time I got an appointment with an oncologist/hemotologist, my blood counts were rising.  Two months later, well on my way to good health, no leukemia, the CDC finally let me know that I had West Nile Virus.  I began at that time to have escalating problems with hands and feet during the winter, but I managed the problem, didn’t mention it to my doctor, and went on with normal life.

From the summer of 2007 until December 2008 my doctors and I dealt with pain and spinal issues until lumbar fusion was scheduled. Meantime, I was having growing problems with CAD.  Even in our home, heated to 70, my toes, fingers, nose would turn white then purple.  Any exposure outdoors would add in ears, cheeks, mottled legs, and purple knees.  I tried heated gloves and socks, wool socks, chemical heat packs, only receiving partial relief.

In December as I lay waiting to be taken to the operating suite for the lumbar surgery, in rapid succession a nurse, the anesthesiologist, and the woman running the blood cleansing machine came in, read my chart, and said, “Cold agglutinins, I don’t know anything about them.  I’d better go study up.”  At that point my husband was ready to kidnap me, hospital gown and all, to get me away from these uninformed people.  My surgeon reassured him that the operating suite would be heated higher than the normal cold temperature, that I would have warmed blankets on me at all times, that two units of blood were typed and cross matched and would be given warmed, and that the surgical staff was prepared for my case.

The blood cleansing machine would not be used because there was no guarantee that the blood could be kept warm.  Of the blood that runs through the machine, only red blood cells are returned to the body, the rest are eliminated.   If the red blood cells agglutinated, that would mean that there would be nothing to return to the body.

We made it as far as the operating theatre when the pathologist called down.  My blood cells from the previous days test were hemolysing, and he did not feel that we had sufficient information on CAD to a risk a six-hour surgery.  Surgery was cancelled until I saw a hematologist.  The hematologist okayed the surgery without the blood cleansing machine and with a sufficient supply of typed and cross matched blood for transfusions and suggested that, long range, we consider moving to a warmer climate.

The surgery in January was successful, used only five units of donor blood.  Four days later I was released from the hospital having had countless blood tests, about a third of which had to be repeated because even with heat packs and heated blankets they did not make it to the lab before they agglutinated. 

Ten days later I had a second operation because I was not healing well and had a staph infection.  This entailed four more units of blood, a wound vac pump attached to my spinal wound for five weeks, intravenous antibiotics 3 x daily for 7 weeks, and weekly blood tests at the hospital lab. The hematologist kept track of my blood tests, declared I was improving, and once again suggested that we consider moving to a warmer climate.

To speed healing of my back I was supposed to be walking 1½ miles per day, impossible in Colorado winter weather with CAD.  When I was in town I walked up and down the aisles of the supermarket, wound vac in the basket, PICC line in the arm, turning purple even in the heated store.

Spring began to flirt with winter.  The wound vac and PICC line were finally removed.  I walked until…the pain in shoulders, arms, wrists and hands, once attributed to spinal problems, returned, accompanied by a full-body assault of pain in joints and muscles everywhere except the lower back.

My GP sent me for—you guessed it—more blood tests.  I thought the diagnosis would be rheumatoid arthritis, but I tested off the charts for lupus.  I have now added a rheumatologist to my medical team.

I still don’t know what the total picture of my puzzle will look like.  The rheumatologist questioned the long-ago diagnosis of Borellia, asked me questions about conditions I have never heard of and some I had (pernicious anemia).  There will be a change from Prednisone for pain to something with fewer side effects.  Eventually, I may be sent to Mayo Clinic for further testing.

I suspect my puzzle will never be finished, but some of the pieces are coming together.  Both CAD and lupus are autoimmune diseases.  Some people with lupus test a false positive on the syphilis test.  Rituximab is a drug used for the treatment of both lupus and CAD, and, yes, we are trying to figure out if we can afford to be snowbirds, flying to a warmer climate in the winter and continuing to farm in gorgeous western Colorado in the summer.  Lots of pieces, large puzzle, no big picture….

Peace and grace,
Lael Van Riper

lvanriper@montrose.net

 

Ruth Ann's story

My name is Ruth Ann Ryan and I live in Smithfield, Utah (I am 62 years old). Sue told me about the Cold Agglutinin Disease (CAD) Website and it is so nice to know that I’m not the only person in the world with CAD. Thanks again for responding. Sorry I’m so slow in getting back with you. (Life has been a little crazy.)

I also have Waldenstrom Macroglobulinemia without the syndrome. I have known that I had CAD since Oct 2006. (I know now that I have had it much longer. In the past, when I would cross-county ski or would get cold, my hands and feet would get so cold I could hardly function and then they would start turning purple.)

Back to 2006 - The Doctor did some tests and my “M spike” was very high so he sent me to a Cancer Doctor in our area. The Doctor did a bone marrow biopsy and it showed that I had something wrong, but the tests were inconclusive. The biopsy also said that I needed additional tests, but they were not done. Both of my Doctor’s said to get back with them if I started feeling ill, whatever that was. So I went along knowing that I had cold agglutinin disease and not knowing what the underlying cause was.

Last year was full of all kinds of surprises. I am not sure if that had an effect on my disease acting up. In September I started feeling very tired and had a hard time functioning. On Oct 13, 2008, I received two units of blood. (Prior to the transfusion, when they drew blood they did not keep it warm so I had to go back again.  It was also difficult to find a blood match, so I had to wait four days before the first transfusion.) They did heat the blood when I received the blood transfusion, thank goodness.  My Doctor told me it may not last and that I may need an additional transfusion, but to always keep warm.

I asked for additional information about CAD and he did not get back with me, so I contacted the Huntsman Cancer Center in Salt Lake City, Utah and made my own appointment. (I think they were interested in me because I had CAD and my condition was rare)  My first appointment was Thursday Oct 23, 2008 and they did numerous blood tests. On Monday, October 26, I had to have a blood test at a Hospital close to where I live and my blood levels were lower so they had me come to Salt Lake. I had to go back again on Tuesday Oct 27, because they were concerned about me and they wanted a CT Scan as soon as possible. They had also forgot to draw enough blood on Monday, so they could find a match for a blood transfusion.

In the afternoon after the CT-Scan I was having a hard time functioning and they were very concerned about my levels as they were still going down. Hematocrit - 20.8 and my Hemoglobin - 7.4. They admitted me in the Hospital and from there I got a final diagnosis and started treatments. Two units of blood, Rituxan and Cladribine.

I received four treatments of Rituxan in November 2008. I am currently doing very well! I went to Doctor Gilbert, in Salt Lake on Thursday, July 16, and my levels are - Hemoglobin 12.9; Hematocrit - 35.0;  Platelets 163. I have to go back again in three months, unless I start feeling ill.

My main concern is that I don’t want this to happen again and I want to do whatever it takes to make sure it doesn’t. So I’m interested in what I need to do to stay healthy, and if there are any precursors to the disease. “Please let me know your secrets.”

I lead a semi-active life style and I’m always doing something - from gardening, crafts, sewing and traveling to our cabin in WY, keeping up two houses and two yards and working full time. I’m not biking because I think I’ve gotten lazy. Please let me know what I need to do to stay healthy. Do I still have the disease? Is it always lurking in the back waiting to flair up again?

Thanks,
Ruth Ann

ruthannr5@hotmail.com

 

Barbara's story

I've been visiting your website for over a year now.  My anemia was discovered on a routine CBC in June 2005.  That winter I began exhibiting Raynaud's symptoms.  It took the lab staff 3 hrs to type and crossmatch my blood prior to my first, and hopefully last, blood transfusion in Feb. 2006.  The nurse informed me they'd encountered a "cold agglutinin", and she provided me with a printout explaining what it is.  Back home, I searched the web to learn more about cold agglutins and came to believe I might have CAD.

I was referred to a hematologist in April 2006 because my PCP believed I had a hemolytic anemia.  The hematologist ran more bloodwork, but said it was not hemolytic.  He started me on routine Procrit injections for 2 yrs.  All that time he knew I had a "hard" agglutinin and sent me to the hospital lab for my CBCs since my blood plugged up the clinic's automated machine.  More than once I mentioned CAD to him, but he insisted I didn't have it.

In July 2008, I turned 65 and immediately changed health care plans and doctors.  By August I'd been set up with a new hematologist who said I certainly do have CAD.  My cold agglutinin titer was 1:20480.  Monoclonal B-cells showed up in my blood and bone marrow.  I was diagnosed with low-grade B-cell lymphoma and received the 4-wk round of Rituxan in Oct 2008.  I had a good response to it and haven't needed Procrit injections since then.

However, I and my hematologist were disappointed this week to see that my red cell count has dropped to the low end of normal, and my LDH is above normal.  He showed me how my counts had slowly dropped since summer.  I'll be going in for labwork monthly now and more often if I have symptoms.  He promises not to let me get too anemic before ordering another round of Rituxan.

My doctor also strongly encouraged me to start spending the winter months in Arizona.  He emphasized that my efforts to stay warm aren't helping that much, and winter isn't even here yet.  I've discussed this with my husband, and it would be hard to swing financially.  Still, we might be able to find a way to spend at least a month there each year.

I'm wondering if it's even worth looking into.  Have your other readers (CADys) any specific ideas on good, affordable winter destinations?

Thanks so much for this great website.  I enjoy checking back now and again.  My heart goes out to all the others who share this disease.

 

2012 UPDATE

I first contacted Betty in December 2009.  I was concerned that my blood counts were beginning to fall again that winter.  My hematologist decided to watch and wait to see if they'd rise with the coming spring.  By April 2010 my hemoglobin had dropped to 9.6, and hematocrit to 25.8 when the doctor decided it was time for another round of Rituxan (4 wks).  I again had an excellent response to the treatment which lasted 19 months.

My hematologist ordered another round of Rituxan in December 2011 when my hemoglobin suddenly dropped to 9.4 and my hematocrit to 29.0.  He thought it was better to start treatment then since winter was just starting.  I reluctantly agreed, but two months after treatment, I'm feeling great, and my blood counts are well into normal range.  My LDH which had reached a high of 540 is now 181.  My hemoglobin is 14.1, and hematocrit is 43.6.

When I had my last checkup in January, I asked my doctor how much longer he thinks the Rituxan treatments will work.  I was concerned because an acquaintance with follicular lymphoma said Rituxan stopped working for him after 5 years.  My doctor assured me that because my underlying lymphoma is very slow-growing, Rituxan should work much longer for me.  Since this disease is here to stay, I certainly hope so!

My very best to all the CADdys out there!

Sincerely
Barbara Sparks

baja714@msn.com

 

Don's Story 

I am 70 years old, retired and living in a golfing community near Providence Forge, Virginia.  My CAD saga began in 1999 when my primary care physician noted that my hemoglobin count was low.  He put me through a series on tests to determine the cause but nothing surfaced.  At the same time I noted some physical symptoms that I now know is associated with my disease.  However, at the time I did not realize the connection.  These were nose and ears turning blue when exposed to cold weather and difficulty in getting back to my jogging regimen that after a hiatus of ten years or so I had determined to start again.  I felt weak and unable to do more than a fast walk for a mile.  I quit after about two months effort. 

 

Finally, my primary care physician referred me to an oncologist who almost immediately recognized the symptoms.  A bone marrow biopsy confirmed that I had a low grade lymphoma accompanied by cold agglutinins.  He had me go through a couple of treatment of oral chemotherapy.  (I'm sorry that I can't remember the name of the medicine used.)  In any event, the treatments appeared to have no effect.  A second bone marrow biopsy after the treatments showed that the lymphoma had increased slightly and that the cold agglutinins were still present. 

 

At the time my hematocrit readings were in the low to mid-30's - Low but my life was not substantially affected.  I learned to stay out of the cold and that I would be unable to participate in any significant physical activity.  So it was determined to check my red blood cell levels every three months and monitor the situation...  I was living in Northern Virginia at the time, working 8-10 hours a day, playing golf every weekend, and generally enjoying life.

 

The only thing worth noting was that sometime in 2004-05 (I can't remember exactly) the machines used to measure hematocrit were unable to get a viable reading as the blood was clumping too quickly - even keeping it warm up to the time it was processed was inadequate.  We adapted and began to measure red blood cell levels by the hemoglobin readings. 

 

In 2004 my wife and I moved to our present home near Providence Forge and began looking for a good oncologist or hematologist in this area.  We found a superb doctor at the Peninsula Cancer Institute in Williamsburg, Virginia who was well versed in the eclectic nature of my disease.  After a few sessions we determined to continue the quarterly monitoring.  This went well for a couple of years.  But then increasing attacks of chronic sinusitis begin causing problems.  Each time I suffered a sinus infection or other stress related condition my Hemoglobin count would crash to 6-7 levels.    After each attack my blood levels came back up on their own once I had treatment (usually antibiotics) that alleviated the sinus attack or stress related issue - A radical prostectomy was one such incident and my blood levels were low until the catheter was removed.  After a year of so of this my doctor, concerned about a massive drop, decided that I should undergo two years of Rituxan (Rituximab) treatments.

 

Things went along as usual - And the quarterly blood tests showed their usual ups and downs.  About this same time my frequent sinus attacks were controlled by a daily dose of Allegra-D 24H and I felt good up until this last summer (2009). 

 

This summer in late August after return from a trip abroad my hemoglobin count went down to 6 and didn't come back up on its own.  I was about to begin my 4th and supposedly last series of Rituxan treatments in early September.  In the interim, my doctor prescribed a massive dose of prednisone and wanted to see how the Rituxan and prednisone would work before considering other options.  Unfortunately, this was the last time I would see this excellent doctor.  He suffered a back incident in early Oct and has been out of action since. 

 

His absence from the practice caused a bit of an upheaval to say the least.  I was assigned to a new doctor who ordered a bone marrow biopsy and continued the prednisone - 100 mg per day.  And I started the Rituxan treatments on 8 September.  The bone marrow biopsy showed that my lymphoma was in remission but there was no doubt that my cold agglutinins disease remained in full force as my hemoglobin count hovered in the mid-6's.  My doctor ordered a blood transfusion and in the period 22 Sept to 11 Nov I had five blood transfusions. 

 

My doctor told me that while the Rituxan worked on the low-grade lymphoma it sometimes took a bit longer to work on the cold agglutinins anti-bodies.  Essentially we were in a wait and see mode.  This was extremely frustrating for me, particularly as it looked like I was in for a regimen of transfusions every couple of weeks...  Under doctor's orders I was still taking prednisone although it appeared that I had "chronic CAD" and everything that I had read indicated that prednisone was not recommended.  I had backed down to 60 mg per day.  I was also taking folic acid, iron tabs, and B-12 shots (once a week).  And had an iron transfusion as the doctor thought my iron reserves were low and wanted to bring them up.

 

I decided I needed a second opinion and arranged a visit to the Massey Cancer Center at VICE, Richmond, Virginia.  My first appointment was on 18 November.  The doctor that I saw there was extremely knowledgeable about CAD and associated diseases. And as it turned out the doctor that I had been assigned to at the Peninsula Cancer Institute had studied under him at VCU.  Not only that but PCI is collaborating with Massey in a number of cases.  I was added to that list.

 

More interestingly, a couple of days after the 11 Nov transfusion my hemoglobin count was 8.4.  In the next two weeks it worked its way down to 7.7 then stabilized for about a week.  On my last test on 16 Nov it had moved back up to 8.6.  We're hoping this trend will continue.  If it doesn't the doctor appears inclined to have me take another series of Rituxan treatments.  No matter what happens he plans to have me take these in February but will move the series up if my blood levels don't continue to rise or begin to fall again.  And with Massey doctor's concurrence I've backed totally off the prednisone. 

 

I might also add that after spending more time exploring and reading the CAD website and about the same time I saw the doctor at Massey I decided to swear off cold drinks and ice cream.  Prior to this I liked my drinks with lots of ice, liked to chew ice, loved ice cream, and dearly loved a nice, cold beer.  Now I fairly rigidly follow a regimen of room temperature drinks and except for an occasional yogurt have no ice cream whatsoever.  I have no idea whether this has triggered the upward movement of my red blood cell count but I'm not a great believer in coincidence.   I asked both the doctor at Massey and at PCI whether they knew anything about cold drinks or ice affecting RBC levels for CAD sufferers.  Neither did but both said it couldn't hurt. 

 

As you can see the story is not complete.  I'm hopeful that the upward trend will continue but there are still unanswered questions.  Why did it fall so drastically in the first place?  There was no sinus attack or other physical disorder that I could discern.   Will Rituxan be a regular every six months? 

 

In any event, like all of you I'm sure, I found the CAD website extremely helpful.  If any of you have any comments, ideas, suggestions I'm all ears. 

 

UPDATE

27mar2013

Since the events described above my hemoglobin levels have been fairly normal, at least for me, ranging from about 9.0 to 11.0.   I can’t remember exactly but I believe my medical records will show that I underwent a Rituxan treatment in the spring of 2010 but none since.

I continue taking Allegra D 24 hour and have not experienced any sinus attack during this period.  I had one bout with food poisoning while visiting my mother in San Diego.  My blood crashed severely.  It had been close to 11.0 prior to my trip and when I returned it was on the low side of 9.  And I was by then feeling much better.  I don’t know how low my hemoglobin levels went but it most have been somewhere in the 7 range or lower considering how I felt.

As a follow on to the notes I made in late 2009 regarding my long period of complications with CAD where my hemoglobin was 7.0 or below, I now believe this was caused by a low grade chest infection that was eventually cured by my primary care doctor who prescribed some antibiotics after hearing pneumonia type sounds in my chest at the same time that I was undergoing transfusions.   

I also note from my earlier notes that I had been fairly consistent about avoiding cold food and drinks during that same 4 plus months of complications.   I have to admit regressing a bit on this.  I generally have ice in sodas or drinks that call for ice, and will enjoy ice cream regularly.  I haven’t noticed that doing so has had any adverse impact on my CAD.

As I write this my doctor at the Peninsula Cancer Institute in Williamsburg, Doctor Kerbin, is relocating, and I have scheduled an appointment with Dr. Ginder, Director of the Massey Cancer Center at VCU…   Of some concern is a gradual lowering of my hemoglobin levels over the past year.  Where I used to be regularly in the 10 plus area, recently this has been more at 9 plus level.  My life style is still active but I’ve noticed a slight physical impairment with these lower levels.  Dr. Kerbin thinks maybe another series of Rituxun might be advised and I will discuss this with Dr. Ginder… 

 

Regards,

Don

donaldbowman@cox.net

 


2010 starts here


 

Jay's Story - as told by Barb

My husband had been diagnosed with AIHA back in January of 2006.  He has had six treatments of Rituxan.  Prior to the last treatment his hemoglobin dropped to 8, so they gave him a blood transfusion in October. After that, his fingers started to pain him terribly. The doctor said it was because of the Cold Agglutinin.

 

Ended up in emergency where they gave him his sixth treatment of Rituxan and the doctor said Cytoxan would also help. Was in the hospital for six days in terrible pain with his fingers He received the Rituxan, but, unfortunately, his fingers on the right hand, the middle and ring finger and pinky turned a dark color with the ring finger tip turning black.  It was diagnosed as gangrene. 

 

He had three more treatments of Rituxan, ended up with the morphine patch for pain.  Also had three more treatments of Cytoxan.  In the meantime, he had to have his toe nails cut, so went to his foot doctor.  This doctor had seen gangrene in toes, so he told us what he did was to prescribe nitro cream to be used on the wrist and joints of those fingers that were affected by the Cold Agglutin, which was what our doctor eventually said was causing the gangrene.  He also had five more transfusions while in the hospital, but, fortunately these were warmed, which the first one wasn't, and I think is what caused the gangrene. 

 

At this point, his one finger (the tip is dead) I started soaking it in Epson Salts.  Our doctor has never seen this, so we are on our own with the treatment.  He just wants to keep giving my husband Cytoxan, which I don't feel is helping much.  I guess I'm just venting, don't know what else to do at this point. 

 

His hemoglobin was 10.6 two weeks ago, before he got the last dose of Cytoxan.  We go back on Monday to see our Oncologist. We actually went 11 months before we had to have Rituxan again, but the doctor panicked when his blood dropped to 8 which is when he ordered the "cold'" transfusion and when our bad troubles started.  Don't know what your situation is at this point, but I do know that cold transfusions are a NO NO. 

 

Have no idea what the doctor wants to do next.  I feel he should leave well enough alone for awhile.  Thanks for your beautiful support group.

 

Update 18 January 2010: 

Went to the doctor today and he feels that Jay should have at least two more doses of Cytoxan.  I don't agree.  His numbers are good, the cold agglutinin dropped to 2038 and the last Hgb was 11.7.  Dr. feels that we are on the right track and we should do this since Jay tolerates it pretty well, thank God.

Barb
bjab32@aol.com

 

Dennis's story

I am a 72 year old male - first generation Greek descent.

 

Father had a kidney tumor and passed at the age of 79, Mother had nothing but arthritis and she died at the age of 94. My sister is a cancer survivor, still going strong at 83 but my brother succumbed to heart disease at 78. I hoping I'm blessed with my Mother's heart!

 

In December, 2004, I went to the hospital with pain on my left side just below the chest (later to be identified as being caused by shingles). Full torso scan, EKG and blood tests were taken - scan and EKG was normal - blood tests were not. Shingles were eventually cured but the blood tests eventually led me to a hematologist/oncologist (Dr. Paul Chung). Long story short: a year later after repeated blood testing and a bone marrow biopsy, I was diagnosed with CLL (Chronic Lymphocytic Lymphoma/Leukemia). I was told that this was a cancer that could last for many years until something more serious took over!

 

So, I did what any other computer nerd would do, I began tracking my blood tests on a spreadsheet which my oncologist found very helpful. Over the next couple of years my blood levels remained relatively stable - which meant there was no treatment protocol as yet - but we kept an eye on them on a three month interval. Since January 2006, my hemoglobin was slowly headed below 10.0 and I was found to have (CAD) Cold Agglutinin Disease (my body creates antibodies containing an enzyme [CD20] that destroy Red Blood Cells). I was sent for a million blood tests at Cooper University Hospital and consulted with Dr. Kanu Sharan.

 

Funny but serious side of this whole thing with the CAD is that I have to keep myself warm. It was suggested that I move to a warmer climate - well this year, there was no warm climate in the US, except of course Hawaii - so I stayed in New Jersey with the promise that I would do the best I could to keep myself warm. (CAD is exacerbated when outside temperature on your skin gets to below 70 F.)

 

When my blood levels got to 9.4, In November of 2009, I was given a transfusion and 4 chemo infusions of RITUXIN (each one week apart). The rituxin worked well, the chemo center at Southern Ocean County Hospital was a great place to get treatment and since than I have been relatively clean of CAD. I still have CLL, my Hemoglobin is hovering about 9.5. Because of the cold weather here in New Jersey I'm told that the CAD could return in three to six months. Currently I am on biweekly blood tests for another six weeks. Well - that's my story - so now we'll see.

 

Thanks for listening!

 

Dennis Fotopoulos

dgfoto504@gmail.com

 

 

Judy's story

My name is Judy Filipich.  I am 72 years old and live in Murrysville,

 

PA. My story began eleven years ago when I told my doctor that I thought that I was anemic.  He then wrote a prescription for a Hemoglobin and hematocrit level.  The results came back showing that my hemoglobin level was down to eight.  I then had my reticulocyte index tested which came out to a 6.6% meaning that my red blood cells last about twenty days, and normally they should last for one hundred twenty days.  I didn’t have to go through a lot of tests to find out why I was anemic, since my primary care doctor figured it our right away.  He referred me to an oncology hematologist who informed me that I might need a blood transfusion. He performed a bone marrow biopsy and luckily, it turned out to be normal. I was put on Procrit, and my hemoglobin level rose, so I didn’t need a transfusion.  I see my hematologist every five or six weeks for blood work and a check up.  I think that I developed this condition because of the stress experienced after my husband died.  I was only fifty-five years old at the time.

 

I worked part time at Kaufmann’s department store.  Because of the air conditioning, my fingers would turn white, seem to become frozen, and I would lose feeling in them.  I would have to leave my work place and soak my hands in warm water.  The air conditioning continued to bother me to the point where I was getting blood in my urine.  At first it was thought that I had kidney stones, but that was ruled out.  My doctor referred me to an urologist who performed a cystoscopy.  He found everything to be normal, but performed a cystoscopy again just to be sure.  I could no longer work in an air conditioned environment, so I had to retire. 

 

I was very concerned to see all this blood in my urine.  While I worked, the insurance I had then mailed the Procrit to me and I was able to give myself the shots that I needed once a week, but when I retired and am now on Medicare, I have to go the doctor’s office every one or two weeks, have a CBC done first, and if my hemoglobin count is under twelve, then I receive a shot. My blood has to be drawn from my arm since it is impossible to have it drawn from my finger.  I have an appointment with my hematologist about every five weeks, and he does a lot of blood work. 

 

For about a year and a half, I have been on Aranest, which is longer acting.  I can go up to three weeks without a shot in the summer.  Well, now, after having been on these medications for four years with Medicare, they now decided not to cover Aranest or Procrit, and there is no way I could pay for this myself.  Aranest is about $2000 a shot.  They pay if you have cancer up to a hemoglobin level of 10, but not at all for cold agglutinin disease.  How can they pick and choose like this!  I even went the Senator’s office for help, but they refused to believe that I had primary cold agglutinin disease even though I gave them permission to review my medical records. It didn’t do any good.  They told me that since I am seeing an oncologist, that I must have cancer and that my doctor wasn’t using the right codes I felt like I was put out to pasture.

 

I then called the producer of this medication and was told that there is a foundation that helps those whose insurance does not cover it. I and my doctor’s office had to apply and be approved in order to receive this medication.  It took a month for the approval to come through, and in the interim, I had to buy the medication on my own.

 

When preparing meals, I can’t cut chicken or vegetables from the refrigerator, without stopping to warm my hands in warm water.  When shopping in the supermarket, I wear gloves and hand warmers, and still my hands become white and numb.  When driving, I place my gloves on the heater vent to warm them up.  I took a gardening course, and we had a class outside to learn how prune trees and shrubs.  It was cold, and although the temperature was in the thirty’s my nose turned to a dark purple color.  This even happens in a supermarket.  

 

I love to garden and swim and am in very good health, except for this condition.

 

Judy Filipich

jude_jc@yahoo.com

 

 

Chris’s story 

I am writing this worried about my husband Chris who was diagnosed with Cold Agglutinin Auto Immune Hemolytic  Anemia about 6 years ago after feeling unwell decorating in November. His hands felt rubbery and he was passing blood and felt extremely tired.

On visiting our GP he was admitted immediately  to our local hospital in the Isle of Man ( Famous for the annual TT races and Manx tail less cats,  situated in the Irish sea). After a week of  tests, with us unsure of what was happening and fearing the worst, they sent him by plane to the UK to Liverpool Royal Hospital, our specialist for blood disorders in the north west of England. Here he was given extensive tests under different conditions  and was found to be a healthy specimen for his age, he is now 64, but they found unexplained CAHAD with his hemoglobin levels extremely low but at least now we had a name for what was wrong.

He was sent home and given a course of steroids and we made the plane journey back and forth each week with the steroids stepped up to a massive 12 a day plus folic acid, but no blood transfusions as yet. Yes his levels went up slightly for a while but he was like a manic hyperactive bunny who couldn't make rational decisions and was hell to live with.

I trawled  the internet for information as we felt so isolated because it is so rare. My husband we think is one of only two in the north west UK with it. We have been told this so many times like we are lottery winners….. if this is a lottery win we can do without it. Even the specialists are stumped on how to treat it here in the UK its so rare. So when I came across an article that stated that steroids did little to help in the long term I printed it out for my husband to read. He decided to take it with him on his next visit to the Royal. He was a bit nervous in showing to his doctor but she was more than glad to read it. So gradually the steroids where withdrawn over a number of months Thank God!

Now he was started on a course of immune suppressants which helped lifting his levels to an expectable level and gradually our visits went from weekly to bi weekly then monthly to every two months to three. This was also helped by mild winters and warm summer weather. So gradually Chris eased himself off the immune suppressants to just what he felt was acceptable, as he, up until this illness, had never taken any medication in his life or indeed hardly visited our GP. The word paracetomal is alien to him. He was a fit man who worked outside in the building trade enjoyed the outdoor life and had travelled the world in his youth in the Merchant Navy, being ill wasn't the norm for Chris and knocked him for six as it meant a life change and early retirement. But he has always been a positive man who wont let things beat him and was determined to keep as active and as busy as he was able with his now limitations.

Pushing himself and giving himself goals to achieve like last summer climbing Ben Nevis with our eldest son and astounding the doctors at the Royal that he had the energy to do it. This is Chris always positive. So we feel hurt by comments from friends and neighbors who think taking iron pills is the answer and when they see Chris on "good days" they think he is fully recovered, we wish. They look at us gob smacked when we say "No its for life"  "Really" is the answer. For most people its a mouth full of a disease and how can you be walking around if its that bad.

We had a winter sun holiday in January 09 to Egypt which proved sunshine is the tonic he needs as he felt energized, so I think after this years awfully long cold winter that will be what the doctor ordered for future winters to break it up a little and make him feel a little more like his old self again especially as we are now back to three weekly visits with his blood levels lower.

He was shocked when they told him that it was 5.1 on his last visit, his consultant said " You shouldn't be standing!" So he was rushed for more painful tests, six phials where taken and they found his blood was "sticky" but his level had come up to 8.1, on his last visit three weeks earlier it was 7.1. Chris' body seems to have adjusted over the years to low levels so he is quite happy at 8.1 though of course feels the benefit when its higher. The highest its been is 12.3.

We don't know how long he has had this disease, maybe years, as he remembers always feeling tired but just putting it down to hard work and adapting to it, which we think has put him in good stead now as it would knock someone else sideways.

He is in bed now trying to get warm as its a very wet day outside, damp air seems to bring on his condition as does foggy weather along with extreme cold, with first his hands becoming purple speckled even with thermal gloves and now his feet are starting and he has the purple ears, nose etc on exposed areas. Has anyone the same problems as he has wearing glasses they get steamed up when he wears all the head gear.

We would love to hear from anyone in the UK with this disorder particularly in our area.

Update May 2010
Thought I would give you an up date on Chris's visit to the Royal hospital Liverpool last Wednesday 14th April. We have to be up at the un Godly hour of 5 am to get to our local airport for our 7.10 am flight to Liverpool. Chris had his bloods taken and then the long wait for results and a 5 minute chat with a consultant - all that way but that's the NHS for you. Thankfully Chris's blood was up a little to 8.'7, not brilliant but at least rising with the warmer weather we've been having ; so thankfully we have a respite of 10 weeks till our next visit as its an extremely tiring day for both of us and always takes us days to recover.

Not sure if they are satisfied with Chris's results or just a cost cutting measure as our health service is a massive hungry beast but anyway we have a hotline if we are at all worried. Chris seems to have adapted to his low levels and possibly may have had this condition far longer than diagnosed maybe from childhood so seems to be able to cope on half throttle. He is busy working on the outside of our house at the moment as the weather permits and actually puts healthy men to shame as he never stops till his condition prevents him. He has  always been very positive and up beat and is more concerned about me half the time than himself. So to all the CAD sufferers out there be positive and try to live as normal a life that you can and make the most of the good days like Chris does.

Update January 2012
I have just been having another good look at the CADDY website to refresh myself and Chris, its amazing how you find bits of information relevant that you may miss on previous visits, so advise other sufferers  to do the  same on a regular basis. Being well informed  is crucial to this rare condition as you find often that you have to inform the medical profession as often they have never ever come across it before in their careers.

As over 300 patients travel from the Isle of Man per week to various hospitals in the Liverpool area Nobles being a small hospital can not cope with very rare heath issues such as certain cancers, blood diseases, transplants, serious gyna and obstetrics etc though is brilliant at burns, fractures & motor bike injuries  because of our motor biking history. 

This was our second visit this month having been already on the 4th.  We were up early on a gloomy drizzly morning to get the 7.10 am first flight to John Lennon airport where we are met by  mini buses to take us for our appointments many patients are wheel chair bound, which makes you even though suffering; feel quite humble.

He  suffered a set back in late November even though he felt ok. He was greeted by 2 consultants and a specialist nurse when called in for his appointment, all looking extremely concerned as his levels had dropped to an all time low of 6.6, lower than when he was first diagnosed. Their  immediate reaction was to talk of blood transfusions and wanted to admit him which Chris refused preferring to have his medication stepped up and be at home instead.

He had been managing on just 3 immunosuppressant's a week which in hindsight was silly but he has always been determined to take the minimum he could get away with  and as "he managed" he got away with it . Mainly because he was seeing and convincing  his specialist nurse rather than a consultant.

His rude awakening came after being silly doing some gardening the day before his check up when he got well and truly caught out.

So he was prescribed 8 steroids and and 3 immunosuppressant's a day (instead of the 3 a week he had been taking) and had to come back in 4 days to see if they had managed to increase his levels which they had to 8.6,  and was allowed to decrease the steroids to 7 a day after mentioning the they did very little after a quick effect when initially prescribed when first diagnosed. We had another appointment booked for the next week with his levels being 8.9 and another just before Christmas on the 23rd when his levels had slightly dropped  back to 8.7.

On our visit before the last it was 8.6 . On our visit on Wednesday it was 8.9 and he now takes 2 a day of the steroids and 3 of the immunosuppressant daily and we go again for another visit on the 1st February. We think the next step if there is no real improvement he will have to have blood transfusions as the next course of treatment.

With this disease you can not afford to drop your guard or be complacent and even though you may not show symptoms or like Chris having just learned to adapt to levels which would hospitalize others, it also pays to keep record of your treatments so you can refer back and in our case remind medical practitioners of past treatments.

I am in the process of trying to abbreviate Chris's condition to enable him to have information readily on hand in case of medical emergencies or holidays etc, possibly using pictorial info easily understood to help in case of foreign travel, which can be placed in a wallet or some kind of  wrist band - medi alerts have there place in most diseases, but with CADDY being so rare earlier intervention ie warmed rooms, blood etc is required quickly and the effort of trying to explain can be frustrating and life threatening  when there could be delays because of language and ignorance Even when visiting your Optician or Dentist it is advisable to inform them ,as often other health issues can arise. On a visit to our dentist we found the cold spray treatments they use can cause problems, so please CAD sufferers do a print out for them to study before you go for treatment.

Claire & Chris Morgan
claire_sons_maid@msn.com

 

Annegret's story

My first encounter was in 1991.

At this time my Primary Care Physician could not get a CBC, because my blood clotted. So he sent me to a Hematologist. He drew blood and really did not tell my anything. My PCP told me during my next visit that this was a Condition of my Blood (not being able to get a CBC) and it was nothing to worry about.

Fast forward to 2002. We moved and subsequently I changed Doctors. The new Doctor did not believe it was nothing to worry about and referred me to a different Hematologist. After several visits and tests the Dr. first suspected I had Multiple Myeloma. A Subsequent Bone Marrow Biopsy ruled this out and I was told that I had Cold Agglutinin Syndrome. At that time my Hemoglobin Levels were still in the 11 – 12 Range. He advised me to take Folic Acid and to stay warm. I visited with him every 3 months.

We moved again, but I still continued to drive 80 miles one way to see him every 3 months, but all he was doing was “watching” my Hemoglobin. I asked him for a referral to a Hematologist closer to my Home and he referred me to my current Doctor.

He started seeing me once every 2 months. My Hemoglobin started to decline and he put me on Leukeran for a while. At one point I was taking Prednisone. I had one series of 8 Rituxan infusions, which ended in August 2009. The last infusion I received at a Clinic in Everett, WA just prior to going on a Cruise to Alaska. When we returned I went immediately to the Clinic in Everett, since I was feeling extremely weak. They made arrangements for a Blood Transfusion, since my Hemoglobin was 3.9.

I received one further Blood Transfusion in June 2010.

Having had several transfusions, my ferritin levels were close to 1000 and my doctor put me on Exjade. I took Exjade for 3 months and this lowered my ferritin levels to about 500. So right now, I don't have to take it. As a matter of fact, right now, with the exception of Folic Acid, I am not taking any medication that is specifically for the CAD.

Since my Hemoglobin has stabilized around 10 – 10.5 my Hematologist felt that is is sufficient to see him once a year.

I see my PCP every 3-4 months and he checks my Hemoglobin, I also still see my original Hematologist in Dallas once a year, so I feel that everything is covered.

I keep warm, do not eat cold food and do not drink any cold drinks.

Annegret Winsor

aewinsor@gmail.com

 

Marta's story

 

Me llamo Marta, tengo 55 años, vivo en Las Islas Canarias (España).

En el verano del año 2000, al salir del baño en la playa, mis piernas se pusieron rojas y picaba mucho. Al año siguiente, cuando me  bañaba en el mar, la urticaria se extendió por todo el cuerpo.

En el año 2002 comenzó a hacerme daño el frío, mis pies se dormían y dolían mucho, mis orejas, nariz y manos se volvían de color violáceo.

Lo comentaba a los médicos y no me daban una respuesta, así que continué con mi vida normal pero sin ir a la playa y cuidándome del frío.

Durante estos años, en algunas ocasiones, mi orina era de color marrón.

En noviembre de 2008 me hice un análisis de rutina y se me aglutinaron los glóbulos rojos, luego calentaron los tubos para colocar la sangre y repitieron el examen.

Tenía la hemoglobina a 9, glóbulos rojos 2,900,000 y los glóbulos blancos: 2.500.

Criaglutininas reactivas a 4ºC: ( 1 /512) y a temperatura ambiente: ( 1 / 64), no reactivas a temperaturas superiores a 30º C.

Mi hematólogo me hizo un scanner y descartó cualquier otra enfermedad y diagnosticó CAD. Tomo 5 miligramos de ácido fólico todos los días.

Consulté a tres hematólogos más y no saben lo que tengo.

En el verano del pasado año ( 2009) mi hemoglobina subió a 12.5 pero en enero de 2010 bajó a 10.5.

La hemólisis continúa.

Mi tratamiento actual es ácido fólico y cuidarme del frío.

Me pregunto qué puedo hacer para tener unos valores normales. El clima de Canarias es cálido. En invierno tenemos una media de 18ºC.

Soy profesora y no sé si el contacto con los virus que los niños llevan a clase me perjudica. ¿Cree Ud que no debo trabajar?

¿Se convertirá esta enfermedad en otra más grave como me dicen algunos médicos?

Mi hematólogo dice que tengo Cad y que así seguirá siempre, ¿Que opina Ud?

He buscado en España algún caso de Cad y no he encontrado. Me puse en contacto con el Centro de enfermedades raras en España (FEDER) y no conocían a nadie. Por eso me llevé una gran alegría al encontrar esta página web en EEUU.

Ahora sé que hay personas con esta patología. Me he sentido muy mal pues los médicos no me entendían. Aún hoy algunos médicos no me creen.

Muchas gracias a Bea y Betty por contestarme tan rápidamente y ser tan amables conmigo.

He resumido mi historia desde el año 2000. ¿Qué opina de todo esto?

GRACIAS

 

  TRADUCCIÓN - TRANSLATION

 

My name is Marta, I have 55 years, living in the Canary Islands (Spain).

In the summer of 2000, out of the bath on the beach, my legs were red and itched a lot. The following year, when I was bathing in the sea, the hives are spread throughout the body.

In 2002 he began to hurt me cold, my feet fell asleep and were very sore, my ears, nose and hands turned purplish.

He said doctors and did not give me an answer, so I continued with my normal life without going to the beach and watching over me from the cold.

During these years, sometimes my urine was brown.

In November 2008 I did a routine analysis and I agglutinated red blood cells, then heated the blood tubing set and repeated the test.

I have hemoglobin was 9, and 2,900,000 red blood cells and white blood cells: 2500.

Criaglutininas reactive at 4 °C: (1 / 512) and room temperatura: (1 / 64), non-reactive at temperatures above 30 º C.

My hematologist gave me a scanner and ruled out any other disease and diagnosed CAD. Volume 5 milligrams of folic acid every day.

I consulted three hematologists more and do not know what I have.

In the summer of last year(2009) my hemoglobin rose to 12.5.But in January 2010 fell to 10.5

The hemolysis continues.

My current treatment is folic acid and take care of the cold.

I wonder what I can do to have normal values. The climate of the Canary Islands is warm. In winter we average 18 º C.

I am a teacher and do not know if contact with the virus that children bring to class hurts me. Do you believe that I should not work?

Does this become a more serious disease like some doctors tell me?

My hematologist says I have CAD and that this will continue forever, what is your opinion?

I searched in Spain one case of CAD and have not found. I got in touch with the Centre for rare diseases in Spain (FEDER) and did not know anyone. So I took a great joy to find this website in the U.S..

Now I know that some people with this condition. I felt very bad because the doctors did not understand me. Even today some doctors do not believe me.

Thank you very much to Bea and Betty for answering so quickly and being so kind to me.

He summed up my story since 2000. What do you think of this?

THANK YOU

 

Marta Loppery 

martaloppery@hotmail.com

 

 

Dorothy's story

 

How fortunate I was to find this webpage together with CADdy's sharing their helpful stories.

 

 

I was dx'ed with Idiopathic Autoimmune Hemolytic Anemia soon after I had four surgeries, four other invasive procedures, anesthesia (of course), all kinds of pain medications (ineffective) in '08 & '09. Now, currently, CAD was added with the possibility of Lymphoma. Path report states that possible B cell Lymphomas present - but words like "unclear", "may", & "not definitive" are puzzling. A PET Scan has been suggested. So that is my state at the moment.

 

I'm still in shock that I reached the age of 80 a couple of months ago. My wonderful husband will be 90 in June and very healthy. We are active, have a good diet (with a few "naughtys"), both are pilots, but no plane any longer. (sigh)

 

Thank you for this list and all those who shared their stories.

 

Smile - your brain will think you're happy! :-)

 

 

Update August 2012

 

First I want to mention that I've had several experiences with the medical profession - the doctors, technicians, labs & staff. So many don't know about CAD and the need for staying warm - the necessity of warming all solutions, care for drawn blood, and putting ice packs on the body or providing warm blankets. It's wise to be vigilant, assertive and by all means follow up on every step.

 

ie:

Blood was drawn. I mentioned I had CAs. Tech asked "what's that?" 

Another time - shall I say a "discussion" broke out between a supervisor (who was taking the blood) and a tech when I mention having CAs. The supervisor quietly told me that she would take care of it.

 

Another time I was to have an IV for retina pictures. The Ophthalmologist told a staff member that I was to have a warm IV solution for the next day's test. I told the tech the next day to warm the IV solution because I had CAs. He told me that "they" don't do that! I pushed that who ever gives me the IV that the solution was to be warm. When the IV doc arrived he was carrying the solution in his shirt pocket. It was warm!

 

After a recent hernia surgery, the nurse put an ice pack on the incision. Groggy, I screamed to get that off of me. That's just a few incidences. It pays to be vigilant & followed through all the way. Good people can "drop the ball"!!!

 

I decided not to do the PET scan. I wasn't convinced it was really necessary. I want to avoid as much radiation as possible & any IV's or shots that scans seem to use. I saw the Hemo/Onc last week. When he arrived instead of the usual "How are you doing?" it was "You're looking good". Wow! (... then why am I here - I said to myself...). We went over the numbers. He still states "borderline Lymphoma" meaning Indolent Non-Hodgins Lymphoma, but I just haven't enough of those cells (but slowly growing) for a definitive dx'. My numbers flux from 6 months to 6 months visits - only a yearly visit to the Endo for a thyroid cyst which hasn't showed any cancer cells ..... yet. So I'm on this "wait & watch" with both docs. The Hemo/Onc's advice as I leave is always "don't get cold"!!!

 

I look ridiculous carrying sweaters & jackets in 90 degrees; however I may be confronted with A/C. It's almost worse in the summer than it is in the winter.

 

Here are my numbers: WBC/6.1; RBC/3.35L; Hgb/11.2L; Hemat/33.1L; MCV/99; RWD/13.9; Titer/1:2048 The Hemo/Onc has not suggested chem or treatment of any sort. Could it be, he knows I would resist? I've had breast cancer 21 years ago & managed with surgery only. My energy is limited, but I get a lot out of what I have.

 

Since I last wrote last my husband's mild "leaky" heart valve, has turned to major. At his age of 92 it's not likely he would survive replacement; but still has a good "pump" & no heart disease per se. He has his limitations tho' - like I do. We still bike, but no hills; walks, but no hikes;  gym classes, but no aerobics; tennis rackets, put away. He uses the gym elevator, I easily manage the 22 steps to Flexible/Movement & Pilates classes (at 82). When through, we both walk DOWN the stairs together. (sigh)

 

Dorothy Ingerson

ingerson@mcn.org

 

Jane's story

 

My mom first realized there was something wrong when she accidentally cut her finger with a blade and instead of bloody red, the blood that oozed out was a bit orange-y. Alarmed, we immediately went to Medical City Hospital the following day for a CBC test and blood typing. We waited for the results for hours, but they kept telling us they couldn't release the results because it was being "rejected".  Finally the head pathologist suggested we go to Metropolitan Hospital because they were better equipped to handle cases like this and so we went and they too had difficulty. They had to run special tests to determine my mom's blood type. The head medtech informed us that her blood was coagulating in room/cold temperature and that she had Cold Agglutinin Disease.

 

Cold Agglutinin Disease is a condition where the antibodies attack red blood cells in cold temperatures. The tech also said that if ever my mom would need a transfusion they would have to use a blood warmer. After going to several different hematologists, we finally settled on Dr. Torres in Cardinal Santos Hospital. He put my mom on 40,000 units a week of Procrit, an injectable medicine that stimulates the bone marrow to produce red blood cells. After 2 shots my mom's hemoglobin rose to 8.9 from 8.6 - a mere .3 but at least there was an improvement. As of now my mom is still taking Procrit. This Thursday (sometime in May 2009) she will receive her 5th shot and if her hemoglobin reaches 10, she'll have clearance to travel abroad to Hawaii for a "2nd" opinion from a hematologist.

 

UPDATE June 18 2010

 

Besides Procrit my mom has also tried taking prednisone and Imuran, as prescribed by Dr. Narciso of St. Luke's Hospital, but with disappointing results. Her hemoglobin which usually hovered at 8.2 to 9 while taking Procrit dropped to 7.6 after a week of taking prednisone/Imuran so she had to have a blood transfusion. After 2 units of blood, her hemoglobin rose to 10.2 but this immediately dropped back down to the 7's after a week or so which necessitated another 3 bags of blood. Again, her blood rose to 10.6 but dropped to 6.8 after another week. In addition to this, she complained of weakness, fatigue, heaviness in the chest, and generally just wasn't feeling as strong as she used to be. Finally, we decided to stop the Imuran and wean her off the prednisone and go back to Dr.Torres to start taking Procrit.  This turned out to be a wise decision as the steroids and Imuran just weren't doing her any good. Perhaps as a result of the Imuran weakening her immune system, my mother also caught pneumonia and had to be hospitalized and treated with IV antibiotics for 4 days and at the same time be given 3 bags of blood which resulted in her hemoglobin rising to 10.3 and now to 11.6 from taking Procrit. 

 

As for life changes...no more extensive malling, staying inside cold air conditioned rooms for too long. Even in hot weather she has to wear socks to bed, and she can't go on a walk without her stopping to catch her breath. The frequent visits to the hospital for injections and blood tests also leaves her feeling drained and depressed at times because she doesn't want to be pricked and prodded with needles anymore. and she has been to so many doctors already.
 
Drugs she has tried include a combo of prednisone and Imuran which didn't work and only led to a huge drop in her hemoglobin and to being transfused several times, almost costing her her life. The Procrit has been effective but the effect usually doesn't last very long.


She has to take 40,000 units of Procrit every week if she's to expect her hemoglobin to stay at the 8.2 - 10 range.  And now Dr. Torres is considering putting her on Rituxan, which my mom isn't too keen on on account of it being a powerful chemo drug and in fear of the side effects that could come with it. 
 
My mom also underwent several tests: a CT scan which tested negative for lymphoma but positive for pneumonia; a bone marrow biopsy, the result of which was possible low-grade myelodysplastic syndrome that has been ruled out by 2 of her doctors, fortunately; and several others like the coomb's test, reticulocyte test, bilirubin tests, and ferritin tests.  Her white count turned out really high and became even higher possibly due to the blood transfusions).

 

So that is her story so far. I shall add more as more happens.

 

Jane's daughter

my_iphone_rox@mail.com

 

 

Barb's story

I was diagnosed with MGUS--Monoclonal Gammopathy of Undetermined Significance-- in 8/09 when an M spike was discovered from a blood test ordered thru my neurologist when evaluating my ulnar neuropathy. 

 

In Jan. 2010 after my Bone Marrow Biopsy, at the age of 61, I was diagnosed with Cold Agglutinin Disease. Since my hemoglobin count was trending down to 11.3  I was  started on Prednisone.  In March my count was 9.7 & I started my first Rituxan infusion.  I had these infusions 1 x wk for 8 wks while taking prednisone & folic acid.  My counts still trended down & there was talk of having my spleen removed w/a very small chance of improvement - glad I didn't go that way.

After my 8th rituxan infusion my count was 7.3; the doc wanted me on chemo.  I requested trying out oral cytoxan, before the heavy duty stuff & I didn't really want a port.  I then had to have a transfusion (3 units that they had to warm up first, which took approx. 12 hrs to administer!).  I then developed a cough & fever of 102 which I couldn't shake, so I was hospitalized for 5 days.  No pneumonia/no cause of fever diagnosed, post nasal drip caused my cough.  Came home & continued w/oral cytoxan & my count started trending upward.  Doc not sure if I improved from the Pred & cytoxan; or the Rituxan & cytoxan; or just the cytoxan.  Very trial & error type of condition.  But eventually, it worked for me.

I haven't seen the doc in 6 wks; will see him this Monday.  Big change from seeing him 3-4 x wk!!  Sept. 2010, my count was 13.7.  I've been in the normal range since July.  I was on oral cytoxan for 2 months & that set me straight.  I'm in complete remission; but there's no promise that I've been "cured".  But I danced at my cousin's wedding in September ALL NIGHT LONG & really feel great now.  10/30/10  

 

Barb Simon  

Miami, FL

fredbarbs66@yahoo.com

 


2011 starts here


 

Danielle's Story

I am Danielle, age 25 from Biringham, England. My story starts in October 2009.

I was always tired and quite moody, if you like, as I’m sure my family would back up. I had no energy for my two young daughters and I had no real help.   As a result of this, my eldest daughter's schooling sometimes suffered as I was usually in bed by around 6 pm and at 7 am, when it was time to get up, I would find it almost impossible to get out of bed. 

 Doctors said that I had depression and since I knew that I did not, I changed doctors so many times to try and get some answers. I knew something was very very wrong! 

 I told my latest doctor that I had severe headaches, always felt tired and was pale and yellow. The nurse from the surgery took my blood and when results came through asked if I was a drinker but at the time gave me no explanation as to why she asked this. I have since been told by my hospital consultant that it was due to the size of my blood platelets being three times bigger then they should be.

 One day, I had just had enough of feeling the way I was and went to the surgery and begged the doctor on duty to do something as I felt as if I was dying. He listened to my symptoms and sent me for blood tests. My results couldn't be read because the sample had clotted as soon as it was taken. But once I eventually got the results it sparked a huge reaction and I had people from the medical profession turn up at my house at around 10 pm at night to tell me I needed to get right to my doctor as my hemoglobin was 5.8. 

  I was still messed around with and given b12 injections that I did not need. Not once did anyone suggest that I go to hospital but eventually I called an ambulance and admitted myself as I could no longer take feeling how I did. I was given 4 bags of blood. I truly believe the transfusions saved me in the short run as I felt so much better after I had had them which gave me a bit of hope. I was in hospital around 10 days but decided to go home and be treated as an outpatient. 

  I was misdiagnosed and at times told nothing. I even demanded a bone marrow test as I was convinced I had cancer because my symptoms were similar to those of some of the cancer patients on the ward. I think that bmb (bone marrow biopsy) was one of the worst things that happened as it was so scary. The results showed that my bone marrow was working in overdrive which was a good sign as it was working and gave the medical team more insight as to what it could actually be. By mid 2010, I was told I had AIHA (autoimmune hemolytic anemia) and then even later that I had cold agglutinin disease. The only reason they found I had CAD is because every time my blood was taken, it clotted which sparked further investigations.

  The worse thing for me about all of this is that my doctors are baffled as to why I have AIHA at all. They have run every test they can think of. I have never had mycoplasma pneumonia, cancer, or any of the obvious reasons to have AIHA. The drugs to help keep my condition at bay until they could figure out what to do was prednisone 70mg per day which was, for me, a massive dose. Although I'm off the med now, I still struggle with the amount of weight I gained. 

  As I am only 25, they would not give me rituxan or chemo that can help reduce the rate that I was killing my blood cells because the available meds could cause liver damage and would mean I couldn’t have any more children. My only option was to have my spleen removed as it was enlarged as well as not doing its job. They said that they could only hope it would slow the process down as they think that my blood may have been destroyed in my spleen.  Actually what the splenectomy did was to prevent the destruction process from happening. I have apparently amazed doctors with this again. 

 I still struggle on a day to day basis with CAD as the only real form of information I have been given is from this site. I still suffer from headaches on a regular basis and I have sadly had 3 miscarriages in 5 months. I would be very interested to find out if anyone has ever carried a baby whilst having this condition. My doctors are running more tests at present to try and determine why the miscarriages have occurred and I really hope that it isn’t due to my condition. When I have my bloods done I have to have the tests at the path lab as my blood clots straight away and a flask does not work either.

 I worry that my children will get it too.  One thing I will say is that having my spleen removed gave me back a quality of life that I was missing out on. Although I am at greater risk of getting things now since my immune system is so low, with the right antibiotics it can work out well. My blood count is currently around 12 and slowly creeping back up. I have an appointment the end of jan 2011 so I will keep you all updated, thanks for taking time to read my story.

 Danni x
danzi123@hotmail.co.uk

 

Noel's Story

My name is Noel daCosta, and I live in Kingston Jamaica.

In late 1996 at age 54 I learned I had CAD as a result of a routine medical examination that showed confusing blood test results. My doctor asked for repeat samples and when they came back with seemingly strange parameters, she referred me to a consultant hematologist who was attached to the national Blood Bank.

Having read of the many cases of misdiagnoses on your website, I consider myself very fortunate that my hematologist Dr. Grace Haynes (now retired), immediately suspected CAD; Hb of 13.8 and positive Direct Coombs test. In a follow up visit, she confirmed CAD and put me on 5mg of Folic acid daily, and had me do monthly blood tests while tracking the course of the disease. She explained to the technicians in the laboratory how to deal with my blood samples, and I quickly became a minor celebrity amongst the laboratory technician crowd, who pointed me out to any of their new members… I once overheard one technician describing me to his colleague as “the man with the science fiction blood”.

I visited the Emory Clinic in Atlanta early in 1997 and had some further tests done. The titer of the antibody was 2048, however there was still activity at 30°C, thereby causing mild anemia despite the relatively low level of antibody in the blood. A bone marrow biopsy was also done, and did not show any evidence of lymphoma.

The specialists at Emory were very complimentary of my hematologist in Jamaica, where as far as I am aware, I am still the only reported case of CAD.

I had previously lived in Canada for a number of years with no difficulty whatsoever, and it is fortunate that it was only after I returned to live in Jamaica that the CAD developed. Although I now live in a warm climate, I am careful to have a coat and undershirt with me at all times, as the low temperatures within the various air conditioned buildings, sometimes cause my fingers and toes to turn blue and become numb. I also have to avoid ice cream and other cold foodstuffs that one normally enjoys in a warm climate.

During 2002 my Hb inexplicably fell to 9.7 accompanied by headaches and feelings of lethargy. My doctor put me on Prednisone and Chlorambucil, which turned my fingernails and toenails black. Over time the Hb gradually increased to around 11.0.

In 2007 I suffered from prostatitis and started passing dark red urine due to the hemolysis. I spent two weeks in hospital during which time my hemoglobin count dropped to 7.0. The internist worked along with my hematologist and I eventually overcame that episode without being transfused. I have since had various infections including lower respiratory tract and cellulitis, and each episode has been accompanied by a lowered Hb count.

In 2006 after some strenuous physical exercise I was told that I started acting strangely and repeatedly asked the same questions. I do not recall that experience which I am told lasted for about 2 hours, and the neurologist that treated me subsequently diagnosed Transient Global Amnesia (TGA).

On learning that I had CAD, he wondered if there might be any connection with the TGA, which is apparently triggered by an insufficiency of oxygen to certain parts of the brain. Both conditions are extremely rare, and there is nothing in the literature that connects the two.

In 2009 again after exercising I experienced another bout of TGA in the gym. TGA can be very disconcerting for those who witness it, but fortunately the sufferer recalls nothing of the episode. My neurologist strongly suspects there is a connection between CAD and TGA, but so far I am a sample of only one.

If any CADdys also suffer from TGA, you can respond to me at ndac@cwjamaica.com as I am sure my neurologist would like to hear about you.

My hemoglobin count currently fluctuates around 12.1 and I have learned how to live a fairly normal life with my anemia. One of the things I have learned, and wish to pass on to other CADdys is that you will probably know more about your condition than most medical practitioners, as you have to live with it every day and have likely researched it more.  Don’t be intimidated or put off by skeptical doctors, nurses and lab technicians, and be proactive in letting them know that you are literally ‘one in a million’. Whenever I have to deal with a new medical practitioner I usually start by enquiring if they know about CAD, and then go on to tell them that I present probably the only case they will experience in their entire career.  This usually gets their attention, and makes them more likely to listen to you when you advise them how to treat with blood sampling and other related issues. 

I close by paying tribute to the organizers of this website.

When I first learned I had CAD, I had the very frightening feeling that I was all alone in the world with this strange disease. The website is a great source of information and I find the stories both comforting and inspiring.

Keep up the good work and please continue updating the website.

Noel daCosta
Kingston, Jamaica
ndac@cwjamaica.com

 

Darlene's story

My name is Darlene Strand and I have been recently diagnosed with Chronic Benign Cold Agglutinin Disease precipitated by M. pneumonia and Epstein Barr Virus infection. 

The only symptoms I had were a slight difficulty in swallowing, occasional coughing, and tiredness which I attributed to getting older.  I’m now 71, which is a peak discovery age for CAD.  Purple spots on my cheeks (which later disappeared) had been pointed out to me a couple of times in the past, but I didn’t relate that to anything.  When facing cataract surgery in January, I needed to have a pre-op blood test and, at that time, autoimmune hemolytic anemia was discovered at a level of 11.6.  A year prior, my blood had clumped during an annual physical’s blood test, but it was attributed to a reaction to the vial.  After a visit to a hematologist and many blood tests, the diagnosis was made.  My titer level is 1:64.

Investigating CAD on the internet has provided me with much information—some anxiety producing and some comforting.  This CAD support site has been especially helpful.  I love reading the stories of people who share in this affliction.  It seems as though so many are active, outdoor people and quite a few live in cold climate areas like I do.  I am very interested to hear about what modifications people have made in their lives to live in a satisfying manner, safely accommodating CAD.  I’ve noticed that I have cut down the number of outdoor walks, x-country skiing, and snowshoeing excursions since I’ve been diagnosed.  I wish this could be otherwise.  Spring is almost here in the Upper Peninsula of Michigan (Iron Mountain), and I’m excited about getting out in the yard and gardens again.

My career was one in the field of education, teaching high school students, and then in the area of guidance counseling, pre-kindergarten to 12th graders, primarily in a very small Wisconsin school district.  (During that time, I was exposed to every flu virus and respiratory illness around and spent much of the winter ill.  I also was a caretaker for my husband before he died and my elderly mother after I retired, and they were both sick with pneumonia a couple of times. Last summer I had an allergic response to something that severely stressed my immune system, so who knows how all this began.)  After I retired, I became more outdoor oriented, kayaking and hiking in many beautiful places.  The world of art also opened up to me and I am an active member of an artist co-op business, painting, drawing, and stitching all kinds of creations.  My life is very active.

During the last few years, a wonderful man has come into my life, and in November, Terry O’Connor and I were married in a beautiful sunset ceremony in Mazatlan, Mexico, with 15 family members present.  He helps me to feel loved and happy and I feel extremely fortunate.  Family and friends are very important to both of us and we are currently bringing together two households—one in Massachusetts and one in Michigan.  The biggest thing that will happen during this month is that Lewis and Gray, Terry’s two cats, will be moving to our Michigan home.  We’ll be driving them here, so it promises to be quite an adventure.

We have four children between us and seven grandchildren. This year, we’ll be helping to celebrate the graduations of two of our grandchildren, one in Colorado and one in the state of Washington.  Life is full.  So with that in mind, I look forward to celebrating the good things that happen in each day, from the goldfinches at the birdfeeders who are showing me their Spring yellow coats right outside my “office” window to the few remaining patches of snow that are rapidly disappearing. 

 I look forward to hearing from anyone who might like to write me.

Darlene Strand
dstrand@charter.net

 

Laraine's story

My name is Laraine Aitken, aged 63, and I live in southern England, UK.  I was diagnosed with Non-Hodgkin's Lymphoma in March 2009 after a routine blood test and bone marrow biopsy. I was also told I had an autoimmune disease but at the time not told anything else.  I guess being told I had lymphatic cancer was enough to take in and I didn't ask many questions at that time.  Sometime later I found out the autoimmune disease was CAD.  I had been diagnosed with Raynaud's syndrome in my early 20's so had always suffered with cold feet and hands but it wasn't really a problem.  Now though the cold is a major problem.

At the moment I am restricted to staying indoors for most of the winter (unfortunately, in this country a day in spring/summer can be like winter!).  Even with hat, scarf and gloves on if I am out too long my hands, feet, ears, nose can go blue/mauve/white and be quite painful.  On one or two occasions lately even my tongue has gone blue.  It feels tingly and then changes from pink to blue which was quite alarming the first time it happened.  When I asked the doctor why it happened he just said it was my antibodies.

I am also finding when going into air conditioned places, or even aircraft, that I start getting an itchy sensation in my nose, sneezing and then appear to have an awful cold.  I can feel quite unwell and it takes me a couple of days to get over it.  I must remember to wear a scarf to cover my nose and mouth in these situations!  Are these symptoms of the CAD experienced by others?  It may be that it is the lymphoma.

As yet, the only treatment I am on is 5mg Folic Acid.  My haemoglobin is 9.2, which although a little low does not seem to concern the doctors now.  It seems as long as I stay in the warm I am not too bad - albeit not a very nice atmosphere to live in.  Sometimes I feel so hot but I have to be to keep my feet and hands from going blue/white.

Because the weather has warmed up my haemaglobin has gone up to 11.1 which is great news. 

I do try and keep my mind busy - I still work at home, but I really do look forward to the summer when I can walk around perhaps without any socks on - today I have 3 pairs thermal socks on and a fur lined pair of boot slippers (great - bought in the winter from Marks & Spencer).  I bought two pair as they really are helpful.  Look out for them next year!

I have found your site so helpful - there is nothing like it here in the UK and everyone needs to feel that they are being cared for when they are unwell, especially so when the disease is so very rare.  Your site has provided me with so much useful information and I am very grateful. 

Warm Regards

Laraine
laraine8@btinternet.com

 

Paul's story

To give some demographic context:  I'm a 76 year old male with a 28 year history of heart disease--two heart attacks 25 and 28 years ago which have destroyed about 40+% of the heart muscle. Otherwise, pretty healthy and active.   My first hint of CAD was 3 ½ years ago when blood tests started failing (couldn't be read) due to agglutination.  It took about four months for my HMO (Maryland) to discern that the problem was due to Cold Agglutinin Disease.  Regular blood tests over the next 3 years plus 1 mg of Folic Acid and some B12 vitamins were all that was prescribed.   I had the usual symptoms of CAD -- fatigue, dizziness, shortness of breath, more angina - due to extra stress on the heart.   Most of the blood test values were below average over those three years, but not dramatically until March of this year, 2011.   At that point, (and to the present) the lab's equipment could no longer read most of the tests due to hemolysis and/or agglutination. About all that the labs could report were Hgb. and manual retics.  By that, I mean the usual precautions of having the heated tubes rushed to the labs no longer sufficed and the labs reported they were unable to test for CBC, and that included Hematocrit and computer analyzed Reticulocytes.   Haptoglobin also could be measured but it had dropped to below 7--unreadable value.  

Two months ago, the three Oncologists I've worked with at my HMO discussed using Steroids or Rituxan.   One of the three suggested starting with Steroids since they were less intrusive and safer.  Then, a week later, the senior member of the three told my wife and me that Steroids only work for Warm Agglutinin Disease so Rituxan was scheduled.  I had 4 infusions over a five week period (with a week off due to a bad cold I had).   Each of the four knocked me out a bit more than the previous one.   During the 3rd treatment, I had the interesting "allergic reaction" in which the entire body goes thru violent shaking for about five minutes.  Quite uncontrollable but interesting.  My blood pressure that is usually in the 90s over the 40s flew up to 170 over 115 or so plus a good bit of angina.  The treatment for the shaking was a large dose of epinephrine and several other injections that controlled the problem.  Although the heated blanket they gave me had instant good effect

The Rituxan may be working, (probably too early to tell) and my Hemoglobin numbers are rising.  Fatigue is greatly reduced and getting better weekly.  Rituxan knocked my Hgb from an average of 11 (for several years) to 7.9.   The HMO debated prescribing two units of blood but waited until my next weekly blood test.    Fortunately, it rose to 8.1 and has continued to rise weekly until last Friday's was 11.1.    More weekly tests will determine if I hit the magic Remission with normal Hgb. or hang around the same somewhat low Hgb. level common to CAD.  Perhaps, my blood will improve so that the machines can test for CBC and Hematocrit, etc.  (As of Friday's--August 26/11 blood test, Hgb. remains at 11.1 and Hematocrit still cannot be read.)

As a side point, my wife and I have been going to Florida for the last three years and plan to again to avoid the cold weather of MD.  But, in fact, I wonder if that is necessary.  Northern Florida can be pretty cool in Jan/Feb and putting on scarves and hats is no burden in (pretty mild) MD.

Many thanks for the Web site.   For a disease that affects such a small percentage of the population, the internet is ideal for spreading information and your web site is a great instrument for all of us with this malady.

In closing, I'd like to ask a couple of questions to see if others on the site have answers or advice.

1. Do any of you experience the same problem I have with blood tests?   The HMO lab pre-heats the tubes and takes them literally 20' away for analysis.  Even with these precautions, the machines cannot read Hematocrit due to agglutination or hemolysis.  The technique that worked for three years of having a driver take the samples to the U.S.'s largest lab has also failed (since April) due to agglutination. 
2. Given the fact that Rituxan knocked my Hgb. from 11 range to 7.9, would any of you advise me repeating a Rituxan regimen if the Oncologist suggests it? 
3. My cold agglutinin titers have jumped around a great deal.  Within a week from 600s to 20,000, then back to 300s then a couple of weeks later back up to 2500s.   Common?   Generally, they seem to be around 300s to 600s.
4. Last question:  many of you seem to be on 2 mg. of Folic Acid.  Is that a "magic bullet" and I wonder if I should urge my doctor to increase my 1K dosage to that level.

Thanks again for maintaining the web site.   It has helped me a great deal.

Paul Schindler
paulschindler@verizon.net

 

Elsa's story

I was diagnosed a little more than a year ago with chronic lymphocytic leukemia, which was discovered after the doctors realized I had CAD.  The doctors performed a bone marrow biopsy as a precaution only, thinking that it was probably stand alone CAD, but alas, this was not the case!  I am a 44 year old mother of two and am just thankful that I will be able to raise my children (they are 5 and 7), since CLL is so slow moving.  Raising my kids is my most important mission! 

I am very upbeat about life because I know how lucky I am to be alive and to have my wonderful family.  Of course, some days I can feel really sorry for myself, especially when I can’t seem to shake the blue toes, fingers, nose- you name it.  I have to remind myself that I am part of a lucky few that fall under the category of the “new healthy:” unpleasant diagnoses but we are among the living and able to enjoy life if we choose to- we just have to work around the illness.  I am tested every 3 months or so and will hopefully not need treatment for several years.  It’s the jaundice that gets me, but that is only when I catch a cold during the winter.  Unfortunately I had jaundice four times last year, but I am making a concerted effort to be more vigilant around sick people- which can be tough as a high school teacher and the mother of two children in elementary school…..

I never leave home without several self-activating foot and hand warmers and my new electric Columbia boots are amazing.  I have a heater under my desk, which I use all the time.  And after all, I now have the perfect excuse to buy more cashmere- strictly a consignment store purchase, though!

Elsa Woodaman
woodamane@stcva.org

 

Beverley's story

My name is Beverley Walker and I live in Wellington, New Zealand.

I was diagnosed with CAD in Feb 2007 and being a fit 69 year old it came as a shock to me. I was climbing a steep hill with my walking group on a hot sunny day and I just could not go any further. My heart was racing, and my legs were so weak so I came down from the hill onto the flat and I was fine. I went to the Doctor the next day and within a few days I was having my first blood transfusion. I felt a new woman, but unfortunately it does not last.

In late March I went to Christchurch to look after my 11 year old granddaughter while her parents were overseas but I became very sick with vomiting and diarrhoea so by the time I came home my blood count was in the 70's and I spent the night in the hospital getting transfused.  I had 5 transfusions every 2 months in 2007 and my readings were between 77- 96.

2008-2009 was a good year as I was in remission and my blood count reached 115. Unfortunately in June 2010 the count was back to the 80's. 2011 has not been a good year for me heathwise with various other ailments.

The Specialist offered me the drug Rutuximab to see if that would help.  I went to hospital one day a week for a month for treatment.  I was lucky I had no serious side effects, but he also told me I had Waldenstrom's Macroglobulinemia (what a mouthful) which was a big shock. WM is a rare type of slow growing non-Hodgkin Lymphoma cancer. I had never been examined for that but I guess the blood test must have shown it. After my treatment I asked about what the outcome was but he said not to worry you have plenty of life to live yet so I am going to take his advice. There is some very good web sites on the internet which is very helpful for this disease.

CAD has been a challenge especially as I suffer with very sore fingers when it is cold. My nose and tips of the fingers go black when it is really cold like snowing which fortunately is quite rare here. I take 5mg of folic acid daily and I use heat and click glove warmers which do help. I have a drawer full of merino scarves, hats, gloves and singlets. My blood count is now 97 and I am feeling better and gaining my appetite. I have more energy, and with summer around the corner life will be wonderful.

I do enjoy reading your stories – one does not feel so isolated as there are so few of us sufferers in New Zealand.

Beverley Walker
beverley.walker@xtra.co.nz

 


2012 starts here


Kristie's story

My name is Kristie and I was diagnosed with CAD in 2010. I was 27 years old and 8 months pregnant at the time with my 5th child.

At the time no Dr's knew anything about what was happening but I do remember huge amounts of blood tests and the thought of leukemia floating around which was quite scary.......they decided to induce labor at 38 weeks as they weren't sure how the extreme anemia and symptoms would affect my unborn baby, he was born healthy but put into special care for 5 days due to breathing problems (I don't know if this was a direct result or a problem of his own).

About 4 months later I was given the diagnosis of primary CAD and continued to see a hematologist for about a year or so until everything settled down and I was sent home with a 'stay warm'. I'm actually lucky as living in Queensland, Australia it's a warm tropical climate so my symptoms and issues are quite controlled most of the time.
I have 6 weekly blood tests to make sure things are going along as they should.

April 2012 update....
Pregnant with number 6 (27 weeks along).

After consulting with a gynecologist before I started ttc I was advised to plan the first part of my pregnancy over the warmest months to give the best chance of growth.
I fell pregnant a month after but had an early miscarriage which happened to coincide with an increase in CAD symptoms. (I've never had a miscarriage before but it can't be truly pinpointed to being caused by the CAD).

Anyway we fell pregnant a few months later and so far all was well....I've been closely monitored since about 8 weeks including fortnightly blood tests and ultrasounds etc. Now though I've been feeling increasingly worse (we are heading into winter soon) and my hemoglobin levels are rapidly dropping....lots of headaches, fatigue and a general unwell feeling as well as lots of bruising.
Not too sure what the plan is at this stage except for preventative measures like keeping warm and hot drinks, vitamins etc.

Will update as I know more......I hope my story helps those with pregnancy CAD questions or just shines a light on my life with CAD.

Kristie
angelbaby-0023@hotmail.com

 

Karen's story

I  am 60, female, and very active. 

My husband and I are both retired, and have traveled to various places to explore and hike, kayak, and visit the USA National Parks.  

During a hike on a rather chilly day my husband looked at me and said I have something on my nose, and cheeks, he said it looked like blue/black ink or something.  I checked my hands to see if maybe I had touched something, and of course there wasn’t anything on my hands, but I noticed that my fingers were also a blue/black color.   

This seemed very strange and startling to me, and I couldn't seem to find the answer(?)  Then I had become extremely tired within those next few days, which I knew was a red flag for me.  I went to my family doctor, and she directed me to Vanderbilt Hospital in Nashville, Tennessee.  I was admitted and given many tests to rule out any hepatitis, west nile, tick, and other tests.  Finally they did a bone marrow test to check for leukemia, and that was ok, no cancers. 

My blood was an issue as they were concerned with the very low numbers, especially where my "red" counts were dangerously low. I received the first of many transfusions, the first couple of days I felt weak but somewhat better, and that didn't last.  I was sent home once my number came back up to 10, and it was only a few days after that I was re-admitted to the hospital, where I was given more blood, and it was my first infusion of retuxin.  My numbers had improved but still needed to come up more. 

I was released from Vanderbilt once more, and was scheduled to return for another retuxin infusion, and then had 2 more treatments. These were done as outpatient treatments at Vanderbilts onocology center.  All of this happened this year(2012). It was at the end of April that all of this had been addressed and treated medically, but I would say there were probably hints of "red flags", going on right along for a while, and I would pass it off as maybe not getting enough rest, or maybe I need to take more in my list of supplements(?). 

Little did I know that something so strange and startling was bringing me down.  I am now happy to report that I was in for my counts, and check-up on June 27th, 2012 and was thrilled to be told that my numbers had all come up, especially my "red" count, it was at 11.3 I will go back again on July 30th, 2012, and they will take another look at where I am with all the numbers, and if all looks as it is suppose to, they will stretch out my visits to every 6 months. 

Right now I am feeling really good, all the symptoms have seemed to have passed (either temporarily or permanently). I only know that I have to keep warm when in air conditioned places, and focus on rest, and eating well, and of coarse I have several supplements that I take daily.  The weather where I live is not an issue in the warmer months. It stays warm from May to September, and trails off to a bit cooler in October.  My husband and I are going to Fla. in September to vacation, and while we are there, we hope to check out the condos that are furnished to rent during the cold months we get. 

I  can't think of anything else to share, except there is one supplement that I would like folks to consider taking it is a "food" supplement, it is cayenne pepper capsules, they come in different "heat" units, from 40,000 heat units and higher.  I have taken these for years to "help" warm my feet and hands, and generally improve my circulation. Trust me, this is something valuable to those of you who have problems in these areas.  It is always a good idea to mention this to your doctor, in case there are problems you may have medically that would keep you from taking this. 

I would like to say it’s wonderful to have a support group for many who are in need of information. I really felt very stressed and scared when I realized how rare this condition is.  

I appreciate all the help that this website has provided. Bless all that are looking to recover, and to stay well. 

UPDATE - 7 December 2012
I
am writing this from Vanderbilt University Hospital in Nashville Tennessee. It's where I have been for the last 5 days as they needed to transfuse again and start another series of rituxin treatments due to a sudden nose dive of my hemocrit levels and the other vital numbers as well.  Today I may be released as my response to blood and treatment has been very good.  My jaundice is fading and I can breathe again without difficulty, This cad is not an easy thing to constantly deal with, and I try to manage a decent attitude (as I find it hard to totally accept at times), anyway I just wanted to give you folks an update, as I realize somebody keeps up with recent medical activity going on with the cad group.

Karen S
krs1951@hotmail.com

 

Lauretta's story

Dear CAD’s and CADettes!

How wonderful it was to discover kindred souls even if through a little understood hence accursed medium of the computer. I’m in my 88th year so unless the medical industry gets going on a solution, my story may represent the future of the C&C corps.

You’d think that with six kids some would opt for a warmer than 49 degrees north latitude. After we retired people used to ask about our winter travels and gasped when we said “Rochester, Minnesota” in January to celebrate a cluster of birthdays. Too bad about the minus forty degree windchill.

Our daughter and her husband work for the Mayo Clinic so that when I refused a shopping trip to the storied “Mall of America” because of a back ache they ran me through triage and 4 days of scrutiny at the end of which it was concluded the back problem was a question of posture, exercise and a support garment, but raised for the first time the nature and dangers of say, what? Cold Agglutinin Disease??

It started with hands and feet and spread to ears, nose, upper lip, and tongue. Increasingly, when shopping for vittles I find it necessary to thrust the loaded shopping cart at my husband for the “check-out” while I high-tail for the controlled climate of the car. So far the symptoms have been reversible.

We are permanent guests of our youngest daughter’s “carriage house”. Not only under her scrutiny but beneficiaries of the knowledge she has acquired ancillary to her work with the accuracy of billings in a major medical facility. When I bundle up as she would have me, I break into a sweat even while the extremities are “CAD”ding. It’s been a long time since my husband has suggested a burkah, He’s even grown a beard so that we could be a matched pair.

In past visits to the frozen north, we have maintained contact with the Mayo doctor who managed my case. No changes, no new discoveries, and to my chagrin, nobody even wants my body for research when I’m done with it. Our eldest (son) has mild Raynauds which is controllable by no more deer hunting. Our fifth child (daughter) may become a candidate for CADs.

In our funeral planning I lean towards cremation: warm at last! When I was a kid I loved to sit on the radiator to get dressed or even do homework. My husband has other problems like holding out to 90 when haircuts will be free!

Lauretta Kurek
ejkurek@juno.com

( When forwarding this, Lauretta told us:
“Just recently found your website, while I have struggled with CAD for more than 20 years.  I was thrilled to find that I am not alone and would love to share my story in the attached document.” 

………we love her sense of humour!)

 


2013 starts here


Fred's story

Diagnosis:  Reynaud's Phenomenon, Cold Agglutinin Anemia
Occupation:  Lecturer - Presenting travelogue programs in schools and retirement communities from world travels.
Height: 5' 5".   Weight:  132

I first noticed my face, hands, nose, and ears turning a purplish color when the weather was cold in 2010. I did not connect it to anything serious, and have always been a person who would like summer weather year-round. 

When I mentioned it to my PCP, he said it was  because I was thin and didn't have enough layer of fat on me.  I mentioned the same to my endochronologist, and he gave the same answer.  Neither suggested Reynaud's, but I knew this was illogical since I had never had this happen before at the same weight level.  About a year later I first heard the term Reynaud's Phenomenon, as was told to me by my nephew, who is a pathologist, and I began to research it on the internet.  Thus far, it was no big deal, but that would change when I received a phone call from my PCP's office in July, 2012, telling me they had phoned in a prescription to my pharmacy for 30mg of Prednisone.  My first thought was remembering the comedian Jerry Lewis had been on Prednisone a few years ago, and had gained 70 pounds by the time he was doing his Muscular Dystrophy Telethon.  I went to my PCP's office and picked up the lab report, and saw the diagnosis Cold Agglutinin Anemia.

I could hardly believe anything was wrong because I have always been a very high energy person, referring to myself as the "Energizer Bunny", and felt full of energy at the time they told me to start taking Prednisone. I have been an avid hiker and walker for all my life, and have kept a journal of my distances the past 15 years.  My current goal during warm weather is to do 80 miles per month, but in winter, being forced inside the mall, I usually end up with 50-60 miles.  Just 7 weeks prior to my PCP ordering the Prednisone I had easily completed a 32-mile walk in NYC called The Great Saunter, a walk around the perimeter of Manhattan Island taking place on the first Saturday of May each year.  This year we had 890 entries.  The next two days after the walk, I was on foot in NYC taking photos from morning to dark, with lots of energy as usual.

At the time my hemoglobin level was 12.2, but it was 9.9 when my doctor ordered the prescription.  I began taking Prednisone on July 31, 2012, 30mg/day.  I really felt like I was being told to take a drug in spite of the fact I felt perfectly well, even at 9.9. The Prednisone certainly worked, as a test on August 15, 2012, showed my hemoglobin to be up to 14.0, from 9.9.  I faithfully took the Prednisone for one month, but just didn't feel up to par while taking it in spite of my numbers looking good on paper.  One day I was doing a presentation and used a laser pointer to show something on the screen, and couldn't control it.  The red dot was all over the screen because my hand was shaking so much, almost like palsy.  It was at that point I made a decision that I didn't want Prednisone in me any longer, and stopped taking it cold turkey.  I knew you were not supposed to do this, and that you needed to be weaned off over considerable time, but I had no problems at all by quitting.  I quit on August 29, 2012, and it didn't take long for my hemoglobin to drop, as my bloodwork on September 7, 2012, showed I was down to 7.2.  I actually felt great at this point, and back to my normal energy in spite of the number being low. 

On September 15, 2012, I left on a 1-week car trip alone to Chicago, feeling great the entire time, taking photos and walking all day until dark with no fatigue at all.  I was glad I was off Prednisone, and felt back to my normal life.  At this point I was unaware that my hemoglobin was at 7.2, and found out 3 days into my trip, when my PCP's office called while I was in Chicago, telling me to go back on 30mg of Prednisone per day.  I had taken the medication with me on the trip just in case I might need it, but I had no desire to go back on 30mg/day considering how it made me feel for a month.  I decided I would try again, but to take only 20mg/day.  At this point I was looking for a new PCP anyway, so I was on my own.  I still have not found a PCP for the past four months, but am fine without one for a while.

What I did was locate a hematologist.  My next bloodwork came on October 29, 2012, with my hematologist, and had been taking 20mg/day of Prednisone, with my hemoglobin up to 11.2.  However, the Prednisone still made me feel less than normal, and just wanted to get off it again.  I am so glad my hematologist has been willing to let me gradually decrease the amount I take, and by November 26, 2012, I was taking on alternate days 15/20mg of Prednisone, and my hemoglobin was 10.5.  I was then allowed to decrease it to 10mg/day, and my hemoglobin on December 19, 2012, was 10.1  We have since decreased it again to taking 5/10mg/day on alternate days, and will find out in a week how it is doing. 

 I have told my hematologist I would like to do an experiment, and just stop taking it again to see what happens.  My feeling is that while the Prednisone works, the treatment is as bad as the problem.  I keep thinking how well I felt in Chicago, walking 10-15 miles per day, Prednisone-free, but was at 7.2.  I think there may be a mental factor involved in that if you are having a great time and motivated toward a goal, it can help override the fact your hemoglobin is low.

I know taking Prednisone long-term is a potential problem, so if it is causing damage somewhere in your body, and you have to stop taking it at some point anyway, why do it.  It looks good on paper, but how do you feel?  The idea of course is to determine if Prednisone will raise your hemoglobin level, and then to wean back off of it after a while to see if your system will then click back or normal on its own so that hopefully you can do without Prednisone.  What we hope for is a remission.

At the present time I am going back to NYC to do the 32-mile walk again on May 4, 2013.  This will be a challenge for the first time, having done six already.  If I had to do it today, I am not sure how far I would get.  I sort of think I could do half, at which point you may have exhausted any more capacity for your blood cells to get enough oxygen to your legs to continue.  It will certainly be a great test, and provide valuable data as to whether you can continue to walk for 10-11 hours.  I will know more as the time between now and then progresses, and will be lengthening my walks, especially when the weather improves.

One thing for sure is that doctors are not likely to have any experience in their practice with a patient having Cold Agglutinin Disease.  I am fairly certain I am the first and only patient my hematologist has had in her practice with CAD.  It wouldn't be unusual for a doctor to go an entire career and never see a patient with CAD.  You may well know more than they do with the exception of interpreting the complex lab reports.

I have in fact learned more on my own from this website and from searching the internet than any other source. None of the doctors have told me things like taking Folic Acid, and am now taking 2mg/day, after suggesting it myself to my doctor.  I also take iron, every other day, and B12 every day.  I recently read about a CAD taking B5, which is Pantothenic Acid, which is important to the manufacture of red blood cells, and am now taking it as well.  This website is our greatest source of information because collectively we can tell what we have learned on our own or from our doctors.  B5 should be taken after a meal by the way. Avoiding cold drinks, or cold anything is adviseable, and also avoiding caffeine.  We tend to think of cold weather to be avoided, but drinking anything cold is putting cold directly into your insides.

Aside from giving me a prescription, I have received no helpful information from the medical profession about taking Folic Acid, iron, B12, B5, or anything except one nurse who said Prednisone can affect your muscles, and you should therefore exercise those muscles.  I found it interesting that at least one CAD is taking 5 mg of Folic Acid per day, and apparently nothing else, and for me that may be the next way to go if I can eliminate Prednisone.

I know having CAD has been devastating to me, since it puts limits on your stamina.  I can still do my 80 miles of walking per month without it being a problem, but now hike on level areas and not back to hills as yet, since it takes your breath away.  I recently told a friend that if an Olympic athlete found out they are now CAD, their athletic career would likely be over. 

I need to mention what Prednisone does to me.  I always take it at lunchtime, and after this I feel overfull, and a loss of appetite, sort of like having a mild upset stomach.  I also get acid reflux sometimes, where none ever existed before.  I can take a Zantac or Pepcid to relieve this feeling, but try not to, because I don't like the idea of taking one drug to eliminate the side effects of another. 

I still have a lot to learn.  I especially am interested in seeing what happens to hemoglobin levels in summer weather compared to winter.  Apparently, the red blood cell destruction is greatest when exposed to cold weather, and minimal in hot weather.  I wonder if I went to Hawaii for the next month or so if my hemoglobin level would stay up by itself without taking Prednisone.  I haven't had this long enough to know how the seasons affect the blood tests.  I also wonder if those who live in year-round warm climates, as to what degree this makes managing CAD easier.

One final thought - I am interested in knowing from someone who works out a lot at a gym, if they have been able to fight CAD, and maintain something close to their athletic abilities in the past.  I wonder if working out, and pushing yourself physically, has helped get back some of your stamina.

Feel free to contact me.  

Update April 2013

It has now been 10 months since being diagnosed with Raynaud's and CAD.  Since my initial story, I have been given insurance approval for the Rituxan treatment, which involves 4 treatments, one per week, given as an I.V. in the doctor's office.  This approval was given about two months ago, but haven't as yet begun treatment.  Of the past 10 months I was on various doses of Prednisone for 7 1/2 months total, having quit cold turkey once, and then being weaned off the second time.  My last day of Prednisone was March 1, 2013, nearly six weeks ago.  The reason for not starting the Rituxan is because my hemoglobin levels started improving with every new blood test after stopping Prednisone.  Since I was improving, it meant postponing the Rituxan to see if I would continue to improve.  I would like to state that Prednisone is an "old school" treatment, and that the preferred choice is Rituxan.  I note that it is common to see that other CAD's never took Prednisone, and received Rituxan early on.  I think it is important to list my hemoglobin levels over the past 10 months to see the pattern.

June 1, 2012   12.5  No medication.
July 25, 2012    9.9  No medication.
August 15, 2012  14.0 - A result of taking 30mg of Prednisone per day
September 7, 2012  7.2 - Had stopped Prednisone cold turkey
October 29, 2012    11.2 - Taking 20mg of Prednisone per day
November 12, 2012   11.5 - Taking 20 mg of Prednisone per day
November 26, 2012   10.5 - Taking 15/20mg of Prednisone on alternate days
December 19, 2012    10.1 - Taking 10mg of Prednisone per day
January 9, 2013    9.9 -  Taking 5/10mg of Prednisone on alternate days
February 4, 2013   10.6 -  Taking 5 mg of Prednisone per day
March 1, 2013   10.7  -  Taking 0/5mg of Prednisone on alternate days
March 21, 2013  11.0 -  Taking no Prednisone
April 11, 2013  11.8 - Taking no Prednisone

As you can see, my hemoglobin levels started improving gradually as the amount of Prednisone was decreased, and especially so after the Prednisone was stopped.  The low end of normal range for hemoglobin for a male is 12.6, so am closing in on that.  Thus the reason for postponing Rituxan.  At the same time my RBC numbers were also improving.  Since March 1, my RBC has gone from 3.49 to 3.94.  It is apparent my CAD is a milder one than others, and regret how many CAD's have had to have transfusions.  I should also mention that my Raynaud's is still as severe as ever, and being in cold weather for only a few minutes results in purple skin tones on hands and face. 

The big question is:  Why would the hemoglobin levels improve after stopping Prednisone?  There seems to be no explanation for this, as one would expect the levels to decline as the Prednisone dosage was reduced.  After stopping Prednisone I was expecting my hemoglobin level to be below 9.0, and instead it was going up.  It would seem there might be a gradual remission taking place.  I don't see my doctor for my next test for 5 weeks now.  A big test will be on May 4, where I am to do a 32-mile walk in New York City around the perimeter of Manhattan Island, where there will be about 900 entries.

What I am about to mention next as a possible explanation for my improvement will sound bizarre, but feel I should take the risk to mention it, as others may wish to investigate this phenomenon.  There is a technique called "Tapping", also known as EFT.  It is a form of acupuncture that involves tapping with one's fingers on various meridian points on the body in a certain sequence while saying specific words.  There are websites and books explaining this, such as the website for Silva Mind Control.  I have been "tapping" only half the days of the past couple of months, and should be doing it every day.  It is the only explanation I can imagine for my improvement, although taking Folic Acid, B5, iron, and B12 tablets has been a big factor, which is certainly likely.  I have been taking these supplements even before I tried the tapping.  It would be a mistake for me not to mention this potentially helpful technique.  It is mostly used for emotional reasons, but also for certain physical problems as well.  Feel free to contact me.

Update July 2013
I have not had any Prednisone for 4 1/2 months now, nor have I had the treatment of Rituxan, although I had been approved for it.  My hemoglobin levels were good enough that the Rituxan kept getting postponed.  On May 3, 2013, I completed the 32-mile walk around the perimeter of Manhattan that I have mentioned previously, and did so with no problems, other than Reynauds causing my skin to turn purplish for a couple of hours due to the cold.  I had no problem physically doing the walk at all, so this gave me a lot of good feelings in regard to having CAD.  I did the walk in about 11 hours time, with only about one hour of that for lunch and breaks.  We had 950 entries, and 450 did all 32 miles.  I cancelled by appointment with my hematologist for June, 2013, because I am feeling fine.  I don't have another appointment set up, so right now I am going by the idea of "if it isn't broken, don't fix it".  I have been doing some hard labor type of work the past couple of months, and doing fine.  I don't know my current level of hemoglobin, and since I feel good, I don't plan to find out for quite a while.  I continue to do my walking regimen, my goal being 80 miles per month, although my schedule often results in it being only 50 or so.

Fred Hartman
travelguykc@att.net.

 

Marla’s story

Marla Vanderlaan ~ 64 yrs old ~ married to Glenn ~ Retired Rural Mail Carrier.  Have 3 grown children & 7 beautiful grandchildren, who all live within a half hour from us in Michigan. We do go to Belize for 3 to 4 months in the winter. 

Fall of 2005, I had a physical & MD didn't like the looks of my blood work, had it re-done & it was worse!  I was sent to a oncologist, who watched me continually get worse & did nothing to help me or figure out what was causing this problem w/my blood.  Found another Dr. & got a 2nd opinion, he immediately started testing me & it took a bone marrow test to find this disease.  This was Feb. 2006.  While Dr. was figuring out a treatment plan I went on vacation for 2 wks. came back was 6.2 hemoglobin & had an emergency blood transfusion.  My Dr. decided the best treatment for me was injections of Aranesp, w/occasional blood transfusions & 1 mg Folic Acid.  Due to the type of job I had (very cold in the winter months) he offered to help me get disability, however, I said "no" I am able to work.  He also tried prednisone, which I had a horrible reaction to, said he had never seen it do such a personality change on a person & had to wean me off it immediately!  That was an experience I'll never forget!  And a boss, that would get very very angry w/me when I needed time off for this disease (he thought it was something I made up).

So we retired, changed insurance companies, and my Dr. left our office & I was assigned a new Dr. (he's great) but the insurance co. said that Aranesp wasn't the treatment for what I had, as did my Dr.   Hence 2 yrs ago I had my 1st Rituxan treatment (series of 4) the 1st one always causes a reaction, I get freezing cold & have uncontrollable tremors, and it's usually a 9/10 hr treatment.  However, the next 3 treatments I breeze right thru.   I am presently doing my second time of the Rituxan treatment, with tomorrow being my last treatment (6-19-13).

I have been a lurker on this board for many yrs. and have decided that I need to join, I need the support of other ppl that have this same disease, as friends/family don't understand the change in lifestyles due to the fact that I don't look sick!  Thank-you for letting me tell my story.

MARLA & GLENN
CocoLocoLady@aol.com

….Life's A Beach

 

 

Øivind's story

Hello my name is Øivind, I am 44 years old and live in the city of Bergen Norway. I`m married and proud father of two wonderful girls. I used to work as a Lawyer, but changed in to public office 4 years ago because of problems with severe CAD.

I have suffered from severe psoriasis arthritis for many years. CAD was discovered in 2007/2008 with a HGB value about 8 and Reynaud symptoms. I had several blood infusions. At the time I was working hard as a Lawyer and - looking back- I felt really exhausted. Thankfully I was taken care of by highly competent/caring doctors in Haukeland University Hospital ( Bergen) and was offered to participate in the Mabthera( Rituxan) Fludarabin study by dr. Sigbjørn Berentsen at the Hospital of Haugesund ( Norway).

MabThera was administered by veneflon infusion and Fludarabin was taken orally as pills.  According to my local specialist my case turned out with more side effects than usual. My problem was repeated respiratory/lung infections and I experienced deep vein thrombosis and several episodes of biliary tract inflammation.  My understanding is that the two problems last mentioned was (most likely) unrelated to the Rituxan/Fludarabin treatment.  About 1 ½ - 2 years after finishing the treatment I experienced a radical improvement with HGB 13.4. The improvement continued with HGB stable around 14.5 and - after a while - no signs of pathology in my blood work. In other words complete remission. Last month my HGB was 14.4 and status was still CR.

I`m very thankful for the excellent medical care I have received and the good results described above. Still I have read that it may be questioned (in general) whether the treatment should be recommended as standard protocol for CAD because of possible side effects. I would assume that the question of trying this combination should be carefully considered for each patient by competent doctors and the patient should (of course) make his decision based upon complete and solid/best available information.

However- at the time (and for the last years) I feel healthy and enjoy life up here in the cold north. I even climb the mountains and participate (on a very low level) in up hill competitions.

I hope the best for all.

Øivind Bjørkås
bjrks@yahoo.no

 

Jeri's story

My name is Jeri Mastny. I am 76 years old, married, and live in San Diego, California (fortunately). I have known that I had CAD for four or five years. It started with an ordinary physical when the labs could not test my blood because it clumped or clotted too fast. After about 17 blood draws at different labs, I was referred to a very excellent hematologist. He keeps that lab on their toes and it is a relief not to be called back all the time for repeated blood tests. He also told me the diagnosis for this disease and I appreciate your web site as a good source of information.

Since the diagnosis, I have learned to live with the disease and try to keep my hemoglobin somewhere in the 9.0 + range. I go in for a blood test about every two months or when I feel the symptoms are worse. Sometimes, the symptoms of this disease cause me problems, but usually they do not. I have taken up drinking tea or room temperature beverages. I can’t resist a little ice cream now and then, paying the price for it afterward. My tongue gets numb like I have been injected with Novocain. I am careful to wear gloves when removing something from the freezer. I try to visit my relatives in Niagara Falls, NY when the weather is warm. My husband prefers to go in late fall or winter and then I take the precautions that I need to.

Last week, I was admitted to the hospital because of gall stones. A gall stone had lodged near my pancreas and liver. That was removed during an Endoscopic procedure. They were going to take my gall bladder out immediately, but my HGB dropped to 7.5 and my bilirubin went way up. They postponed the removal of the gall bladder and after 4 days, sent me home. Everyone at the hospital seemed to be attentive to my needs. They borrowed a liquid warmer from the OR for the IV, although because the drip was very slow, it was not warm by the time it got to me. I expect this is what I will need if they ever decide I need transfusions to control the disease. I kept having to ask for warm blankets and before I left the hospital, 5 had accumulated in my room. One thing that I learned about this experience was the possibility that CAD could cause more incidence of gall stones. I had not heard that from other doctors, but I suppose that it is not important information until you have this happen. I asked why my HGB dipped so low as a result of the procedure and was told that maybe the scope was cold and my body reacted to it.

Jeri Mastny
jerimastny@cox.net

Barry's story

I’ve retired from two careers, commercial art and cell biology.  I’m presently 66. I was diagnosed with CAD in 2004, and later that year, was also diagnosed with Buerger's Disease (a recurring progressive inflammation and clotting of small and medium arteries and veins of the hands and feet). I was 2-pack/day smoker for 45 years, but quit in 2004 after being diagnosed with Buerger's Disease

My wife and I are both originally from the northeastern seaboard of North America, both ending up in the US southwest. We lived there for about 20 years, and then left in 1998 and headed north, now residing in Northwest Pennsylvania. To make a long story short, in 1999, I could still play golf when it was above 35F. Now, in the summer of 2013, I’ve been wearing battery heated gloves and soles almost 24/7.

In February 2003, my wife noticed for the first time that I have dark purple areas on my face and ears while outside in the cold. Buerger’s Disease was diagnosed with an angiogram. An attempt to treat it with steroids didn't do much, but every year, we ended up buying more and more foot warmers and hand warmers, end eventually got to the point this year as described above, with accompanying chronic pain.

Unlike many CADdys, I’ve had no blood transfusions, but I am usually jaundiced. And unlike many of you, the discoloration of my extremities is not accompanied by full body cold, but my hands and feet hurt where I can't walk w/out limping and opening a bag of screws might be darn near impossible. I’ve gotten ulcerations on my toes and fingers, and have lost a few fingernails.  I’ve also noticed a pattern where, 2-3 weeks after any chest infections, I have episodes of discoloration and pain in my fingers and toes.

My oncologist suggested rituxin about 7 years ago, but was leery about it due to my asthma and other deleterious side effects. A specialist in CAD at U Pittsburgh Hillman Cancer Center has re-suggested rituxan, and given the worsening symptoms, I’m seriously considering it.  I’ve just (Sept 2013) had the CT scan and associated blood tests to establish a new baseline (in February 2008, my titer ranged from 1:512 to 1:1024).

I am grateful to have found this website and grateful to the CADdy community for sharing their stories and information through this site and through the Facebook group.

Barry Bonnell
bsbph@hotmail.com

 

Art's story

My name is Art Brown. At the time of this writing in 2013 I am 64 years old. My home is in the United States. My wife and I live near Rockford in the State of Illinois. We are approximately 100 miles west and slightly north of the city of Chicago.

 I am a diabetic and as part of my routine care I visit a neprologist (kidney doctor) on a regular basis. I have been slightly anemic for a number of years and began getting noticeably worse in 2011. The neprologist assumed that my anemia was due to decreased kidney function and began treating me with monthly injections of a drug named Aranesp.

 I was not responding to the Aranesp as the doctor was expecting, so she began thinking that my anemia was from some other source. I bet that you have already guessed that fact due to the nature of this website. I was therefore referred to a hemotologist (blood doctor) in October of 2012.

 After running a number of tests, the hemotologist diagnosed my problem as autoimmune hemolytic anemia and began treating me conservatively with a mild dose of Prednisone. I failed to respond to the Prednisone so she began treatment with Imuran (an anti rejection medication often used for kidney transplant patients).

During the first weekend of December 2012, I became ill with some sort of a stomach virus during the night. By morning, I began feeling better but I was very weak and extremely fatigued. I didn't think much of this due to being ill.  I had an appointment with the hemotologist on Tuesday morning. I was certainly over the stomach virus but I was so easily fatigued that I barely had strength enough to brush my teeth and take a shower. I could barely raise my arms to wash my hair! 

I went to my doctor's appointment and as usual they ran blood tests upon arriving at the office. The doctor got the results and immediately sent me to the hospital emergency room. My hemoglobin level was down in the area of 5! 

I was poked and prodded and prepared for transfusions. Testing prior to receiving the units of blood disclosed that the hospital had to warm my transfusions. This was the first indication to me or to my doctor that my issue was CAD! It was then that I remembered my son-in-law mentioned that while helping replace his well pump in November that my ears had turned purple. 

Prior to confirming that I had CAD I was once again started on Prednisone.......this time in a big dose, 160 mg. 

After several days in the hospital and confirmatory testing that I had indeed been suffering from CAD, the doc began weaning me off of Prednisone slowly, and I began four weeks of Rituxin treatments. In addition, I read everything I could find concerning CAD and found this website, which has been very helpful. 

At first I did not respond to the Rituxan. Meanwhile, I was having a lot of problems with Prednisone side effects. No strength in my legs, high blood sugars, massive appetite, problems with bodily functions...........I was also put on insulin to combat the high blood sugars caused by Prednisone. 

In the middle of January, I was back in the hospital. This time I had a pulmonary embolism  (blood clots in the lungs) and deep vein thrombosis in my legs (blood clots in my legs). While in the hospital for this issue my hemoglobin level fell to 7 and I received two more units of blood. 

Over the course of the next few weeks, I began to get better slowly. My hemoglobin levels stayed around 10.0. I wasn't getting better, but I wasn't getting worse either! 

It took a couple of months before the Rituxin seemed  to begin working in earnest. But once it started working, it worked like a miracle!  By the middle of the summer I was feeling great and my hemoglobin levels were up to 15.2. In addition, all the rest of my blood tests have returned to normal levels. Now my kidney function has improved, my blood sugar levels are much better, my eye sight has improved and I have gotten back all my strength and more. I haven't felt this good in years! I have spent all summer busy as a Tasmainian Devil!!

The doctor has been monitoring me on a regular basis and as the cold weather appoaches I will be monitored more often. Hopefully, I can stay in remission. I am very grateful to the doctors and the wonders of modern medicine.  

One big lesson I learned was that this is a very rare affliction. I am the first patient that my hemotologist had ever treated, and only the third patient treated by the entire oncology department at the hospital in Rockford, Illinois which serves a metropolitan area of around 250,000 people!

Thanks for reading my story and I wish you all the best.

Art Brown
awbrown@charter.net

 

David's story

My name is David McAdam, I live in Sydney, Australia, and in 2013, am 76 years old.

2011. It all started with a morning shower…

Back in April 2011 (autumn in Sydney) during my usual morning shower, I noticed that the top two finger joints on my right hand were purple in colour and the rest of the fingers were mottled. I had never seen this condition before and was quite puzzled. So I visited my ageing GP for his advice. His response was that "you must have some poor circulation and most sufferers put their hands in warm water to improve the colour and circulation". My GP retired shortly after and I moved to a new GP.

Her response was quite different. She ordered a battery of blood tests and gave me a reference to a haematologist who diagnosed my condition initially as some form of haemolytic anaemia. My haemoglobin (Hb) count at this time was approximately 80. (I dug out some old copies of blood tests which I coincidentally had, one of which dated back to 1973 and which showed my then normal Hb count as 153.)

July 2011. In checking these old files I found one in 2008 ordered by my old GP which reported that it could not obtain an Hb count as the blood sample had ‘agglutinated’. I had not spotted this entry at the time, nor had my old GP.

Over the following weeks and months, the haematologist changed his diagnosis to Cold Agglutinin Disease (CAD). To make sure I did not have lymphoma, he had me undergo a bone marrow check using local anaesthetic. I do not recommend this procedure to anybody - unless they are fully sedated and preferably knocked out completely. I have never experienced a more painful procedure. The test proved negative: I did not have lymphoma.

My initial medication was a fairly strong regime of Prednisone. My mental acuity improved out of sight, I felt very relaxed and happy. I reported this, and the haematologist’s reaction was to get me off the Prednisone ASAP. Apparently some patients can react strangely! In any case the Hb count did not budge from the low 80’s. However I was unlucky to experience one of the things that can happen when one lowers one’s immune system – Shingles suddenly appeared! Since I was a bit slow in getting the preventative tablets for Shingles it look many weeks, I lost 10Kg in weight in 2 weeks and I have a reminder every time I now take a warm shower – I get a tickle at one of the shingles locations.

Over the next half dozen appointments, the haematologist checked my blood tests and confirmed that I indeed had CAD. However he had no solution to offer apart from possibly using Mabthera as a treatment, but as I was not a lymphoma sufferer I could not expect any government support for a subsidised Mabthera treatment.

July 2012. I was recommended to approach another haematologist and first met with him in August. He interviewed me in company with his haematology registrar and I then underwent a battery of blood tests, far exceeding anything I had experienced before (at least 12 vials of blood were drawn) and a second bone marrow test, this time with full sedation so I did not feel a thing. Plus a genetic test to eliminate possible genetic hand-me-downs. All results showed it was just CAD.

The conclusion was to try Mabthera infusion chemotherapy since my Hb had dropped to the 80’s again. This was done over 4 weeks and my Hb rose to 112 after a few more weeks.

2013. Life became 2-monthly visits to the hospital, blood test and consultation with my haematologist. The Hb slowly lowered down to the 90’s by August.

August 2013. Underwent a second Mabthera infusion regime. Again the Hb jumped in response and held above the high 90’s for a few weeks. But then my gallbladder announced that it, in its opinion, should be removed. Ultrasound showed that it was full of "sludge" and micro stones, presumably debris from my liver’s disposing of the red blood cells as the CAD antibodies killed them off.

Sept 2013. My Hb was too low for an operation, so a blood transfusion was quickly arranged, and the gallbladder operation accomplished. Hb at the end of all of this was about 106 and has held steady for the following 2 months.

Nov 2013. Acquired a very, very bad cold, which put me to bed for 3-4 days. Lots of coughing etc. My Hb has dropped to 88. Since we are now entering the summer months in Australia, we have decided to see what happens over the next 2 months before the next step is decided upon.

Back to feeling lethargic, thinking hazily as through a curtain, just general lack of energy. Will post again when the scene changes.

David McAdam
dvmmca@gmail.com

 


2014 starts here


 

Craig's story

I have had anemia for many years and the doctors always told me to just take folic acid and that was all I needed to do. I have been pretty active most of my life.

I had taken a new position as a director of a treatment facility and when I started getting fatigued I mostly chalked it up as stress from my new job. I had a routine physical and when the blood work came back my primary doctor set me up with a hematologist letting me know that some of the numbers that he was seeing were a concern.

I went to see this oncologist/ hematologist and he did some more blood draws and in addition to an ultra sound, to check for spleen and liver enlargement he also ordered a PET scan. All that came back normal. Meanwhile between the co-pays and the insurance deductibles I was also having a pocket book ectomy performed. Back to the story. Eventually they did a bone marrow biopsy. This came back with a diagnosis of low grade B-Cell Lymphoma. Damn I got cancer !! Well my doctor wanted me to see another doctor, a lymphoma specialist, for a second opinion.

This doctor has a reputation of being great at what he does. No bedside manner, all business, and according to my nephew's wife, that works at the hospital, that's the guy she'd want. Anyhow I go in with my wife for a 2 hours marathon appointment figuring they would order some treatment. Wrong ! He said that my case is complicated. He said that he needed to send my biopsy samples to Cleveland for an expert pathologist to read.

So after the appointment I was getting the drift that the possibility existed that I didn't have cancer. So I asked the doctor if this was a possibility and he said, "Yes." Wait another 10 days. There has been a lot of waiting with this experience. I'm a patient with no patience. Anyhow, he finally gets a hold of me and said that I didn't have cancer. "That's great I said. " Then he said, "You are still pretty sick" and he gave me the diagnosis of Cold Agglutinin Disease. I had never heard of this before. When I told anyone that asked me about my health issues they didn't ever hear of it either.

My doctor ordered 7 days of Predisone followed by 4 infusions of Rituxan I have actually developed more symptoms while undergoing treatment. I have had some poor circulation before but now my feet feel cold although they are warm to the touch. I have shortness of breath and nausea. I thought that these were Rituxan related but my doctor said that these were more symptoms of the disease. I have also been told that it may take up to a month before the benefits of the Rituxan treatment may be noticed.

Frustrated I happened on to this site and the face book community for this disease called CADdy Chatter. I am less frustrated, feel less isolated, and have begun my peer driven education. I have stayed grateful by looking around in the chemo room at the cancer center and seeing that although I'm sick others have it worse than I do. I want to be well and will be eventually but I have to be patient and take care of myself. Two things I'm not very good at yet but I'm practicing.

Craig Bruesewitz
ckjbreeze@yahoo.com