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Hi Matt. I'm so sorry to hear you've joined the gang with AIHA. Do you know whether you have cold or hot? Also need to know if there's a known cause for your hemolytic anemia. Mine is idiopathic meaning no known cause or trigger. I too was put on 100 mg/day prednisone for about a week, then weaned down by about 50% every week. Took about 4 months to get off entirely. You need to understand why the docs want to remove your spleen. That typically isn't done until the 2nd or sometimes even 3rd relapse, unless your spleen is very enlarged and causing severe problems now.
If you go to the blood disorders thread you will have to go back a few pages but there's a section called "autoimmune hemolytic long?" There are many many good posts there.
There is much support on this health board. You will also find support on other sites for what you will experience with the prednisone. It is a very difficult drug but the first line of defense for this disorder. I wish you well and hope you end up with a negative antibodies test (Coomb's) so you never have to experience this again.
Hi Matt,
I also have AIHA, and like Les, mine is idiopathic. I'm a little different because I also have ITP, Idiopathic Immune Thrombocytopenia - which means my body makes antibodies to both my red blood cells and my platelets. The two conditions for me are like a see-saw, if my anemia is acting up, my platelets rise, if my platelets are low, my red cells rise. I can live much easier with low platelets than red blood cells, although neither is pleasant.

I had my spleen removed in 1995 for my ITP. Getting your spleen removed is nothing to take lightly. For one thing, removing your spleen to cure your anemia only works in a small percentage of patients long term. If you have your spleen removed, and your anemia recurs, you'll be taking immunosuppressant drugs like Pred, and with no spleen, your immune system is really compromised. Other meds for hemolytic anemia are Rituxan - and that is a good drug but it's good to have a spleen if you're going to be on it!

I'd explore all my options before having my spleen removed. Prednisone is not fun to be on, but it is relatively cheap and it does work for most people. See what happens once you come off the Pred and then go from there. You'll learn to recognize your symptoms after a while and get to the doctor before your counts go so low. This is one of those conditions where you can go into remission and stay for awhile, so if you find a treatment that works for you, you may have long stretches where you are perfectly fine.

Did your doctor prescribe folic acid for you? If not, it's worth asking about. It's cheap - and with AIHA, you need much more than a normal person, because when your body is hemolyzing (which means destroying red blood cells), you go through much more folic acid. And regular vitamins don't have enough.

If you have other questions, I'm happy to help. Like Les said, this is a great board to find.

Hi Matt,

I to have idiopathic AIHA. I have been trying to deal with this for about 9 years. Started with prednisone and have been off and on it for the past 9 years. I have had my spleen removed after my third relapse of this blood disorder. As Les44 said it's not something to be taken lightly. Unfortunately for me taking out my spleen didn't work but my hemo doc assured me it does work for 2 in 3 people.

I think hemo docs deal with this disorder by the process of elimination. In my experience this was my process.

1. Prednisone
2. Prednisone & Imuran a immunosuppressant
3. Spleen removed
4. Intragam, Prednison & Imuran
5. Rituxan (2 treatments out of the four)
6. Cyclosplorin, prednisone
7. Gall Bladder Removed, Liver problems needed endoscopy
8. YAY! for Cellcept and prednisone combo

Throughout the treatments whenever my blood dropped I had transfusions and my doc is worried about the long term effects prednisone. But I think that is a pretty extensive list of options. From others experience I would see about Rituxan but really don't get too ahead of yourself with the spleen removal.

Lots have success from prednisone 100mg weaned slowly then monitoring. I definitely wouldn't have the spleen out after the first showing of this disorder my eperience like I said I had it the third and it did nothing to help.

The problem is in Australia Rituxan is not PBS scheme so my doc had to source funding for it. Maybe this is why they do the process of elimination. I would had rather tried the different medications ie. Rituxan before having my spleen removed. Now having no spleen and on immunosuppressant it has taken my over 5 weeks to get over a throat infection/flu.

I am lucky to have found cellcept and have it work for me hopefully you will not have to go through all this but just know we are all here for you! To chat and ask questions.

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