Does anyone here have idiopatic autoimmune hemolytic anemia, cold agglutinin form? And have you used any medications or other means to get your blood counts up? Do you find the condition to be cylical?
Cheers!
ojos
Hi Ojos:
I have never met anyone else who knew about the cold agglutinin form of AHIA (idopatic)!
I was put on Rituxan, an IV therapy that is derived from mouse cells and had succcess with that to raise the counts. Only problem was the counts dropped within 2 weeks of the therapy so we were back at square one.
If you read “My Story”, my doctor had my spleen removed to combact this disease. The success rate looked promising but I have yet to show much improvement, but on the positive side, the counts are not significantly dropping. Has anyone talked to you about what removing the spleen does? Before I write too much, thought I’d ask.
I’ll have to go back to my journals and check into the cyclical possibility. I know my doctor had told me in the beginning that if I moved to Arizona, I’d feel a little better. I don’t recall it being a huge issue though.
Hi!
Rituxan therepy causes fluctuations in the counts for the first four weeks of therepy. My husband’s
counts sunk so low during the first round, that he had 11 transfusions in one month!! He went
through the whole 8 week course and was in ‘remission’ for over a year though, so he is doing a
second round of rituxan this summer.
Wendy
------- Original Message -------
From : CT1957[mailto:aha-cpt3888@lists.careplace.com]
Sent : 6/13/2007 6:17:13 PM
To : wendywx@cvinternet.net
Cc :
Subject : RE: Re: [aha] Cold agglutinin form