cold agglutinins - Anemia Message Board

lilvgirl · 10-26-2001, 01:52 PM

My father recently died suddenly of "cold agglutinis" which developed spontaniously. Since then I've been trying to find out as much information as I can about cold agglutinins. So far I haven't found anything that links cold agglutinins to death so I am still confused about how this happened- does anyone know more about this topic?

lilvgirl · 01-30-2002, 02:11 PM

Thanks for responding- I haven't heard from any one else who knows anything about the subject and my father's doctor doesn't seem to want to explain to me how it could have killed him. I know they gave my father steroids and a platelet transfusion in the hospital, but I guess they didn't work. They tested him for everything thoug- leukemia, etc and found nothing. No, he had never been diagnosed with any blood antibodies before, so it was a very sudden case. I will look for the book you suggested and I hope your wife is doing well.

Bigbobbyd · 02-09-2002, 05:40 PM

My husband was diagnosed with Evans syndrome. He developed pulmonary embolisms and thrombo phebitis. We found out this was caused from cold aggutins. Unfortunately we have not had much success in getting him into remission. He is currently on danazol, cytoxin, prenisone and he gets procrit shots and IVIG every three weeks. He is averaging three blood transfusions every other week. Has anyone been diagnosed with Autoimmune hemolytic anemia with subsequent thrombocytopenia that has cold aggutins? If so have you been successful in slowing the rate of hemolysis?

georgef · 02-15-2002, 10:17 PM

So, the Evan's syndrome is IgM mitigated ONLY? Or
does he also have IgG? I presume only IgM because
the first thing they look for is warm antibody
hemolytic anemia.

IgM antibodies are a tough nut to crack. What
are your husband's hemoglobin counts running
at? How low are the platelets?

Christina had Evan's syndrome with both warm
and cold (IgG and IgM) antibodies. Splenectomy
has apparently (knock on wood) "cured" her. The
surgery might help your husband's platelets
but almost surely would NOT help the IgM.

There is one treatment that I notice is missing
on your list and you should talk with your
doc's about it. It is called "rituxan".
It is a monoclonal antibody for treating
lymphoma. I know a woman who has taken it for
cold antibody and she raised her counts from
around 6.0 to 8.5 - 9.0 range. Thus it hasn't
been a total cure, but it helped. It is not a
chemotherapy so the side effects would be much
more tolerable than Cytoxan.

Best of luck,

George F.

lilvgirl · 02-20-2002, 02:00 PM

Does anyone know of an organization who does research specifically on cold agglutinins? I have looked for such a thing online and at the cdc- but haven't found anything...