When you say your enzymes fluctuate...what are the numbers? It's rare they let patients with AIH avoid treatment so I assume they are very low and fluctuate in the normal range at times? The premise behind treatment is to avoid future damage and risk of developing cirrhosis. So it's great you aren't cirrhotic now. I'm not either but the damage I incurred initially was severe and I had to be put on pred and immunosuppressants. I'm currently only on Imuran. The side effects of the meds are after chronic long term use. If you get off pred, that's one you don't have to worry too much about. The increased risk of cancers with immunosuppressants are generally after 20 or so years of use...and it doesn't mean you'll definitely develop it either. I prefer medication to taking the risk of developing cirrhosis but I didn't have much of a choice with that one.
sorry to hear about your flare. I do always worry about that and life has been stressful lately so I've been trying to remain calm. I have a regular check-up with the hep tomorrow, had bloods drawn yesterday, so hopefully all is well.
Re: Hep A & B vaccinations...we need to have them! It would be most terrible to contract one of those viruses with having AIH as well. They are killed vaccines so there is no risk of developing it from the actual shot.
In regards to the urso...it's my understanding that it's a bile acid so it wouldn't actually serve as an AIH treatment unless the bile ducts were affected in the damage from AIH.
I wish you all success in your treatments. I'm always sad to hear when someone can't get off the pred. It's a wonderful life-saver but has soooooo much bad with longterm use.
Chin up everyone. I always think that it could be much worse and that's why I try not to complain too much...but venting is super helpful so I do and encourage it but in the back of my mind am happy I have this disease over another. A friend of mine has been battling very aggressive breast cancer for the past 4 years. Last week they found it spread to her brain and she had surgery on Monday to remove it...she's only 35.
Good luck and speak to you all soon!
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg