autoimmune hemolytic anemia - Immune Disorders Message Board

mommyofalyssa · 07-05-2001, 05:04 AM

can anyone help me with information?
my daighter is 2 years old she first got sick dec 00. she has been in and out of the hospital since then she just got diagnosed 3 weeks ago with autoimmune hemolytic anemia
she has been so sick,she takes orapred,imuran,folic acid,& iron every day
her hemoglobin is usualy between 3-5 when they put her on the imuran they told me it would help her it made her worse at first her white blood count went sky high,her platlets droped. they are back up a little now but she has lost alot of her hair from the imuran. she is always sick,very tired,& always cold. if anyone can help me with information to help me understand please respond to this or email me.
thank you a very worried mother..

georgef · 07-30-2001, 08:43 PM

Hi,

My wife has autoimmune hemolytic anemia.
We've done a lot of research on the disease and
would be happy to share with you what we know.
Please drop us a line at georgef@cadence.com and
let us know how your little girl is doing.

Best wishes,

George F.

krystella · 08-07-2001, 02:01 AM

Hi there,

My friend also suffers from AIHA... she found out when she was 26, so she's a little older than your daughter. When first diagnosed her red blood count was as low as 7 and her bilirubin was as high as 109. Her doctor put her on and off Prednisone (steriods) starting at 25mg and slowly getting down to 1mg. These helped and for a while after one round of them she was fine. But then she'd relapse into the hemo anaemia.

Eventually she had her spleen removed. Now, this has helped her for about 2-3 months but she's suspicious that it's coming back again after having another blood test and feeling the symptoms of it. She has a series of other immune medical problems which I think tie in with the anaemia.

Ask your doctor about a splenectomy because I've heard they can give outstanding results. Also, I have written to George F and he's very knowledgeable on the subject and has helped me a great deal.

Good luck and I hope your daughter gets better soon.