Auto Immune Hepatitis Support

New here with stage three AIH. I've just been referred from a gastrointestinal Doctor to a Hepatologists. I am scared to death and cried all afternoon. I'm already on 9 msgs of buedesonide and 100 msgs of Imuran and yet my numbers still are going up. I also have autoimmune thyroiditis (Hashimoto's disease since I was 24 years old and diagnosed with AIH last year at age 59. Any word of incouragement and information would be greatly appreciated.

edit to give post a title

Post Edited By Moderator (themiz) : 12/16/2015 6:24:09 AM (GMT-7)

Hi there

Hang on in there. It often takes some time to find the right mix of medication to control the AIH. And a hepatologist is the expert who can help you find this. He or she may for example add in an extra medication such as mycophenolate or tacrolimus. Controlling AIH is a very personalised thing - what works for one patient doesn't work for the next. So it needs someone who has expertise in immunosuppression.

My hep doesn't use staging so I'm not sure what stage 3 is. (And I am in UK so we probably use different definitions anyway). But most people live quite happily with AIH induced fibrosis and cirrhosis. So long as further damage is prevented by medication and routine checks are done to pick up any complications things should be fine. The liver is amazing and can motor along with theoretically limited function.

I am a similar age to you. I have had AIH for 16 years now which is well controlled with mycophenolate and I am fine. Although I do have cirrhosis. Many people have more than one autoimmune disease - I have just developed autoimmune thyroid disease for example. It just seems to happen like that.

I know Dany and others will be along soon with some more advice. Do ask away with any questions. It is frightening I know but you will get there.

Ann

Hello Emerald-Ice,

Welcome...sorry for my delay. Life...gets in the way of the things I want to do. I agree with Ann, everyone is different in their med mixtures. When I was first diagnosed (not staged either but with amount of damage they probably would've put it at 3 since I didn't have cirrhosis just a bunch of fibrosis), they started me on Pred and CellCept (mycophenolate). It has a faster onset of action. So once numbers were stabilizing a bit, they added azathioprine (Imuran). I piggy-backed the two for the two months it takes for the Imuran to kick in. They'll sort you out and you'll be on the road to recovery, in no time! Don't hold on too much to those numbers....I've known folks who were on a transplant list and came off it with the meds. The numbers make it sound scarier. The liver is an amazing organ and regenerates quite well.
The Hashi/AIH combo isn't uncommon either...so there are a few of you out there You are not alone!
Most AIHers live fairly normal lives. It is good to keep a bit active. It also helps keep your mind from wigging out. That's an easy thing to do and is completely understandable. Don't stay in the woe is me for too long. Your body will be grateful for a shake it off attitude. That being said....listen to it. If you're too tired or an activity drained you...rest. I don't practice what I preach. I go, go, go and live off coffee but that works for me

Hi!

This is probably a bit late to me commenting on this post but I was scrolling through and had not seen many posts on AIH. I am from Canada and was diagnosed with AIH type II in December, I was very close to having to have a transplant and I can definitely relate to how scary this disease can be! I have done a lot of research and asked a lot of questions of all my doctors to be as educated as I can on this.

I was started on 60 mg of prednisone in December and 25 of Imuran but am now on 10 of prednisone with a slow decrease and 75 with increases in Imuran. I get every side effect in the book from increases and decreases and can relate to a lot of the stuff you are going through if you ever want to chat :)