This is a
photo of myself and my husband, my grandchild and our new puppy!
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
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
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,
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
Tolerance and Understanding that things are not always what you see on the
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.
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.
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.
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...
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
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
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
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,
John Harm's story
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)
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
Has anyone else who has CAD also developed arthritis? Also, has anyone had
any similar experiences with the methotrexate and azathioprine?
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
I had been showing some signs of aneamia with my doctor suspecting some
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
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
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
Ken Murton's story
I am Ken 73 years young, living near Worcester
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
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
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.
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
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.
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
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
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
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
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.
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.
Ann Close's story
am a retired school teacher, wife of Bill, mother of Will (37) and Janet
(33), grandmother of Caitlyn (6) and Julia (2). 
I am and have always been very active and constantly on the go. The photo
is Bill and 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
Houston, Texas, has really helped me
avoid the extreme low hemoglobin counts.
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
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.
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.
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.
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
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
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.
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
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.
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
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.
Here are a few words about my
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
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.
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
If you want more
informations, please write me.
Hi everyone! My name is
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,
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.
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.
Mary Lou's story
is Mary Lou Lydecker. I live in North Royalton, Ohio. The photo
shows my family, and I am in the center.
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.)
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.
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.
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!)
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.
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.
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
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."
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.
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
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??).
talking to me and watching my every movement closely, he decided to:
Not perform a transfusion since
I appeared to be non-symptomatic and not in any apparent duress,
Send me home to recuperate as
long as I promised not to do ANYTHING but rest,
Have me come in for tests every
other day (bone marrow, MRI, HIV, X-rays, etc.) to rule out cancers and
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.
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
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
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.
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.
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.
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
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
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.
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,
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.
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.
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.
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.
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
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
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.
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?”
got another education, this time on steroids and prednisone. Anabolic
steroids are used to build muscles not prednisone.
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
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.
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.
would love to talk to any of ya’ll about your experiences and or advice.
Hi Graeme. Thank goodness I have found your
website. My name is Pamela Bedford and I currently live in Perth,
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
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.
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,
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
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.
I am from France and have been
diagnosed with Waldenstrom's macroglobulinemia in 2005. Coombs
Positive Hemolytic Anemia.
The diagnostic has been
confirmed by bone marrow biopsy. My bone marrow produces IgM Kappa light
I have a secondary CAD (Cold
Agglutinin Disease) linked to IgM Kappa as well as
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
She does not have Coombs Positive
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:
Severe anaemia (hgb between 8 and 9g/dl blood cells)
Pain and damaged in the joints
But I do not show the
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
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
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.
(France - Paris)
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
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
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
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
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
Peace and grace,
Lael Van Riper
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?
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.
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!
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
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
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.
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
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
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…
Jay's Story - as told by
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
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.
idea what the doctor wants to do next. I feel he should leave well
enough alone for awhile. Thanks for your
beautiful support group.
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.
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!
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.
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.
My name is
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
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.
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.
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.
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.
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.
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!
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.
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.
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.
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
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
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
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
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
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
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.
Me llamo Marta, tengo 55 años, vivo en Las Islas Canarias (España).
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.
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.
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.
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:
Criaglutininas reactivas a 4ºC: ( 1 /512) y a temperatura ambiente: ( 1 /
64), no reactivas a temperaturas superiores a 30º C.
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.
el verano del pasado año ( 2009) mi hemoglobina subió a 12.5 pero en enero
de 2010 bajó a 10.5.
tratamiento actual es ácido fólico y cuidarme del frío.
pregunto qué puedo hacer para tener unos valores normales. El clima de
Canarias es cálido. En invierno tenemos una media de 18ºC.
profesora y no sé si el contacto con los virus que los niños llevan a
clase me perjudica. ¿Cree Ud que no debo trabajar?
convertirá esta enfermedad en otra más grave como me dicen algunos médicos?
hematólogo dice que tengo Cad y que así seguirá siempre, ¿Que opina Ud?
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
resumido mi historia desde el año 2000. ¿Qué opina de todo esto?
TRADUCCIÓN - TRANSLATION
My name is Marta, I have 55 years, living in the Canary Islands (Spain).
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.
2002 he began to hurt me cold, my feet fell asleep and were very sore, my
ears, nose and hands turned purplish.
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.
November 2008 I did a routine analysis and I agglutinated red blood cells,
then heated the blood tubing set and repeated the test.
have hemoglobin was 9, and 2,900,000 red blood cells and white blood
Criaglutininas reactive at 4 °C: (1 / 512) and room temperatura: (1 / 64),
non-reactive at temperatures above 30 º C.
hematologist gave me a scanner and ruled out any other disease and
diagnosed CAD. Volume 5 milligrams of folic acid every day.
consulted three hematologists more and do not know what I have.
the summer of last year(2009) my hemoglobin rose to 12.5.But in January
2010 fell to 10.5
current treatment is folic acid and take care of the cold.
wonder what I can do to have normal values. The climate of the Canary
Islands is warm. In winter we average 18 º C.
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?
this become a more serious disease like some doctors tell me?
hematologist says I have CAD and that this will continue forever, what is
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..
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.
summed up my story since 2000. What do you think of this?
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
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
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
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
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)
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
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
So that is her story so far. I shall add more as more happens.
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.
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
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.
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
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.
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.
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.
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.
is Noel daCosta, and I live in Kingston Jamaica.
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.
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”.
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.
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
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
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
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.
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).
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.
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
CADdys also suffer from TGA, you can respond to me at
email@example.com as I am sure my neurologist would like to hear
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.
by paying tribute to the organizers of this website.
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
the good work and please continue updating the website.
is Darlene Strand and I have been recently diagnosed with Chronic Benign
Cold Agglutinin Disease precipitated by M.
pneumonia and Epstein Barr Virus infection.
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.
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.
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.
look forward to hearing from anyone who might like to write me.
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.
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.
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
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.
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
In closing, I'd like to ask a couple of questions to see if
others on the site have answers or advice.
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.
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?
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.
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.
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
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!
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-
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
(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.
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
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
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.
I am 60,
female, and very active.
and I are both retired, and have traveled to various places to explore and
hike, kayak, and visit the USA National Parks.
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.
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.
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.
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
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.
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
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
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
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
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!
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.”
love her sense of humour!)
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
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.
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.
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
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.
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.
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
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
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.
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.
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.
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.
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
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.
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
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.
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
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.
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.
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
New York City
around the perimeter of
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.