Millym,

I have had the same problems as you, and this is my second bout od AIHA. I have been on prednisolone for a long time and my doctor wants me off it because of the side effects. They put me on Azathioprine 2 months ago, the problem is that it can take up to 3 months to start to take effect so I am on 15mg prednisolne a day and 150mg of the Azathioproine. My early symtoms are the same as yours and I get these when my blood count drops to below 9. I think that the Azathioprine is starting to kick in, but I will let you know more when I see the doctor again in 10 days.

Millym,

I have had great success with the Azathioprine, no side effects and my blood count is now back up to 12 and the pred has reduced to 2.5 mg a day. Hope to be even higher next week when I have my next blood test. The doctor has also confirmed that the antibodies are no longer attacking my red blood cells. I hope to go back to work next month. Yippeeeeeee!!!!!

japlopper,

I'm not sure whether things are done differently in the US, but here in the UK whenever i go for a blood test they only really mention the Hb count, the white cell count and platelet count! In my own experience they only start treatment if your counts drop significantly in a short space of time, like HB from 13 to 8 in 2-3 wks or so! I have never heard of a B12 shot, what is this?

I went for a blood test last week and my Hb is 12.4 which is ok as 3 weeks previous it was 13. My platelets however has dropped from 220 to 142 which the doc is a little concened about, but because i've only just finished my course of rituximab he thinks it may just take a while for things to settle. However he wants to see me next week just in case.
If things do start to deteriate for me again so soon he said they would not be doing the rituximab again because it means this is obviously not working for me! :( However i do feel great in myself and have bags more energy than last year! Fingers crossed things will be ok!
He did however mention azathioprine, which i recalled is what woodmere mentioned.

Question for woodmere... had you had rituximab prior to azathioprine?

Thanks Jill,

I am weaning off the pred, I actually came off it in October, but 4 weeks ago my tests were low, I got the dark urine and the heart thumping on so I was put back on the folic acid and the pred, but not the initial 120mg. I only take 10mg now and I will come off them on the 4th of March.

I have my face back, but I couldn't stand to look at myself in the mirror or go out and be seen. People stared and some just looked horryfied because I was irrecognisable.
I have learned not to take caffeine with the pred so I sleep(but I crave food so much I hate myself when I eat, I take more care of my skin, but i have had some really low moments convinced I was going to just die. It's a bit better now.
I have direct line with my hema, he's great, never wastes a minute, as soon as I feel a little bit ill, he tells me to go over for a blood test.

I just had a MRI scan because of the awful back aches I get, but i think I will mention the B12, next visit as I've been thinking this might be the reason my back hurts.

I also take 150mg of azathioprine, but that has never given me any trouble except the first 3 months with a bit of hair loss....... I grew a beard with the pred and was almost bald with the aztprn..... I felt like a teenage mutant ninja turtle LOL!!!!!

I saw some internet add for this 3 week CURE of AIHA, with a herbal remmedy, 160$ and in 3 weeks you are cured, how nuts is that???? in 3 weeks of coming off my meds I'd be dead!!!!! HEMATAB i think it was called, I hope no one falls for this!!!!!