How long ???? Autoimmune Hemolytic Anemia - Blood and Blood Vessel Message Board

TommyK · 03-22-2006, 06:49 PM

To my poster from last year, thank you and blessings to you!

It's been quite some time since I've updated my condition as I went through a number of scares when a lung nodule was found on a cat scan. With the immediate scare of cancer at bay I still have idiopathic warm autoimmune heymolytic anemia. I'm approaching my first full year with it. I've been able to whittle down the prednisone to 5mg per day and my hemoglobins around 12. My Biliruben is very high right now at 3.4. I'm getting used to being anemic and living life OK. I have been turned down by Aetna for Rituxan and think I'll sit tight and see if I can live with just low doses of prednisone. This message board has been inactive for too long so I thought I'd just post something out there and check up on everyone.

God bless,
TommyK

Les44 · 03-22-2006, 07:36 PM

Hi Tommy,
You're right, this thread has been inactive. It's so great to hear from you. I too just passed my one year since diagnosis. Sounds like you've had a much worse go of it than I have. Been off the pred since June but still Coomb's positive so still go for labs on a regular basis. My hemoglobin hovers around 120. Have to go in and see the doc as soon as it drops below 110, which is hopefully never. I'm sorry you were turned down for Rituxin. Perhaps if your hemoglobin drops into your boots again you'll qualify for the drugs, rather than the spleenectomy.
The thing I hate the most about the treatment for this disease is that I don't seem to be able to fight off flu or cold. I seem to get both of them quite often. I wonder when the immune system is shut down by the prednisone, if it ever comes back to full strength.
Anyway, I wish you well and good health. I'm sure you'll hear from others.

Les