Auto Immune Hepatitis Support

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Emerald-Ice
New Member


Date Joined Aug 2015
Total Posts : 7
   Posted 12/15/2015 10:36 PM (GMT -7)   
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)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 12/16/2015 6:22 AM (GMT -7)   
Welcome to the hep forum, Emerald Ice,

We are those with liver disease of all sorts, and those who love them. My husband is waiting on a transplant list with Hep C caused cirrhosis. He treated the Hep C twice, failed treatment the first time, eradicated the virus the 2nd time. But his liver was too damaged to avoid the need for a transplant.

We do have members with AIH. I have sent an email off and they soon will be along to offer you support. I am not well versed on AIH, but did want to welcome you. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

AIHer
Regular Member


Date Joined May 2012
Total Posts : 196
   Posted 12/16/2015 9:12 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

Emerald-Ice
New Member


Date Joined Aug 2015
Total Posts : 7
   Posted 12/16/2015 10:01 AM (GMT -7)   
Thank you for the warm welcome I appreciated. My hope is to learn new things about this disease. As far as staging I'm at a stage three stage four is transplant. I'm hoping with new doctor that won't happen so soon. Probably won't be able to see new doc until February. It is what it is so I will wait. Thanks again for the welcome

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 844
   Posted 12/20/2015 11:46 AM (GMT -7)   
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 :-)
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

Emerald-Ice
New Member


Date Joined Aug 2015
Total Posts : 7
   Posted 12/20/2015 5:34 PM (GMT -7)   
Thank you all for being so kind and supportive. I cried while trying to process this all. I'm over it and ready to put my big girl panties on and do whatever it takes to tackle this crazy illness. Big hugs to everyone!!

MH5899
New Member


Date Joined Jan 2016
Total Posts : 7
   Posted 6/7/2016 8:45 PM (GMT -7)   
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 :)
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