Hola, my compromised amigos!
About to start Aza for AIH - I know we're all individuals but anyone here have experience of this drug? Not thrilled about it, especially as steroids seem to be bringing my levels down just fine, but the consultant is a good 'un so I'm trusting I'm going on it for a reason. Been warned about the hideousness of the first few weeks but interested if anyone is on it long-term?
Let me know!
Hi there, if you are on Facebook there is a fantastic AIH Support group on there with 3.6 K members all of whom either have AIH themselves or like me am supporting a loved on with the condition.
There is a wealth of knowledge on there with people on all the variations of meds for treating AIH and you'll find loads of great advice and support.
This group of patients actually advised the BLT on there auto immune hepatitis page and leaflets.
It's a private group so anything you choose to share there isn't broadcast to the rest of your friends list so may be useful to you.
Katie
Thank you so much for this! Have requested a join 
Hi, my hubby was initially on steroids too for AIH, but these were tapered off and Azathioprine took over from them. It was almost 7 years ago and he has taken Azathioprine since then with no associated problems other than fatigue at times, which could be caused by the condition itself rather than Aza. Unfortunately by the time he was diagnosed, cirrhosis of the liver had occurred. He is mindful to take it in the evening and with a meal. His dosage is slightly over 1mg per kg of weight. Absolutely no problems so far. Hope this is reassuring. Best wishes Donna
Not had experience with AIH or Azathioprine, but have with long term steroids. You don't want to be on steroids long term if you can help it. There lies the path to diabetes and other metabolic issues...
Ubwa AIH treatment is very different, most have to stay on long term steroids, we are very closely monitored. Some people can stop steroids, not all, it’s very individual. At the start it’s minimum 2 years steroids usually. If you look up AIH treatment you will see.
That’s how the AIH medication works, you start on a high dose of steroid, then an immunosuppressant is added which is the Azathioprine. Personally I didn’t get on with Prednisolone or Azathioprine, so I got changed to Budesinide and Mycophenolate. I was told I will be on this regime of medication for at least 2 years.
hello , I couldn’t tolerate AZA ,It made me feel
So sick and sometimes did throw up all my meds after an hour of taking them recaigo the time so I was changed over to Mercaptopurine 50mg . I seem to be ok on that . And have tapered down to 4mg prednisolone a day , I’ve been on steroids nearly 2 years now . Good luck with the aza .
hi
I’ve been on azathioprine for about six months. My rheumatologist put me on it for my arthritis. I also have PBC. It has brought my liver enzymes down to a normal range. They haven’t been normal in seven years. So it’s a bonus for me. Helping my arthritis, pain, and bringing down my liver enzymes.
I did have some hair loss, for the first six weeks. But it seems to have resolved. No other side effects for me.
Hopefully it does well for you too!!!
Wishing you the best on your journey!
lorrainelouise
Hi, I’ve been on Azathioprine for AIH for years with no problems.
Hi I am on Azathioprine full term, steroids were making mine come down but compared to steroids Azathioprine have had loads less side affects. Just wear factor 50 in the son and have regular bloods done. I was not happy about going on them either but with out them I wouldn't be here. Hope all goes well x
sounds a lot like what I went through steriod started at low dose 10 mg. and my numbers were beautiful, then aza started at 50 mg., all went fine for about 3 weeks when doctor raised it to 100 mg. and then 2 days after that I was extremely sick with very high fever and nausea, I continued it for another day and then called the doctor who told me to lower the dose back down to 50 mg., which I did but I could no longer tolerate the med as I got the fever again, so stopped. I am now on cellcept 1000 mg. a day, and trying to get my numbers regulated as alt has crept up a bit to 81, but doctor seems to be encouraged that the cellcept will work, she just raised it by 250 mg. and I am starting that tonight. You really can't go by what I am saying though, as a lot of people have good luck with aza, so hopefully you will be one of them. Good luck and wishing you great health
I'm on azathioprine for rest of my life, no where near the side effects of steroids - had pain in feet and fingers locking when dosage was too high but now at right levels no issues at all for me
Hi, I was on 40mg Pred ( plus all the other things you have to take alongside it- omeprazole, Ad Cal etc.)Blood sugar all over the place and after 2 weeks I was prescribed 100 mg AZa , at lunchtime, this didn't agree with me and so I take it at night. This was August last year. I am now just on the Aza after tapering off the Prep.
Honestly - no problems, no sickness nothing, my blood sugar is bang on normal again, my ALT is up slightly this week but nothing to worry about. You'll be fine. Just stay away from Google.
The AIH support group is great really knowledgeable and the British Liver Trust runs Zoom support groups.
Really , its manageable.
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