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"looks like" AIH, liver biopsy was non specific

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Posted 12/12/2013 7:37 AM (GMT 0)
New to the community. Just looking for support / others to relate to.

My story:I have yearly physicals so I believe onset is in that time frame. I took prilosec for gerd, I was going to a boot camp, trying to eat better. I started to feel full quickly, nauseas, went to PCP sept 2013 who referred to GI, blood work showedhigh levels 200 to 300s, higher at some point. I had an ultrasound that said I had a fatty liver (but this changed to not having a fatty liver after liver biopsy), an upper endoscopy that was normal and GI doc said I have NERD and not GERD, all the blood tests ruled out hep a, b, c and all other conditions, doc said I was an outlier, and said to come back in 3 months. My PCP did not agree and I had a liver biopsy that was "unspecific" but looked most like autoimmune hepatitis although I did not have the major markers, so I waited a month after the biopsy for more blood work with no significant improvement and started on 40mg of prednisone, but had changes in vision and other side effects so now on 50mg imuran and 20mg prednisone. I worry about the vision although it has improved but not back to where it was, I plan to ask my gi at appt next week about these things.

 I worry if this is treatable I want to see my daughter grow up, she's almost 6.

I overall feel better and I think im dealing more with med side effects but I am so fatigued in the mornings after taking the meds.seems like everyone's condition is unique but know I have the same, worries and concerns.

I'm trying to keep a positive attitude, I think it helps, mentally and mentally will help physically.
Posted 12/12/2013 8:26 AM (GMT 0)
Hi there and welcome

Diagnosing AIH can be very tricky. Often it is a matter of piecing together a range of results, both negative and positive and coming to a view. Usually the biopsy is definitive - but in my case it wasn't. However the other results plus my response to pred was sufficient to tell my doc that is what it was. Subsequent biopsies have confirmed my diagnosis by the way.

The precise cause of AIH remains a mystery. The docs know you have to have a genetic predisposition for it and then something triggers it. But what that genetic make up is and what those triggers are is not known. Often either the patient or a close family member has another autoimmune disease but that is about as far as it goes. But whatever the cause once you have it you have it.

It can take a bit of time to find a balance of meds that suit an individual but the good news is that once that is done most people with AIH go on to lead a pretty normal life with a normal life expectancy. So yes it is treatable. The aim of medication is to minimise further liver damage. But this does mean long term medication to control it. Some people are bothered by ongoing fatigue but others (like me) are not. I was diagnosed 14 years ago now. I am generally very well, I worked full time until my retirement last year and in essence swallow my tablets every day and forget about AIH. I take mycophenolate mofetil (CellCept) which works in the same way as azathioprine.

I suspect the eye side effects will diminish as the pred is reduced further. And you will feel better in yourself. But your doc may be reluctant to reduce it too quickly as the azathioprine (Imuran) takes 4 to 6 weeks to work. Taking the meds with food is the best thing to minimise side effects I have found. You may want to ask your doc next week about budesonide. It is a steroids but works in a different way to prednisone and has a better side effect profile. It may be he doesn't think it is suitable for you but it is worth asking.

Dany one of the moderators here has AIH and will be along soon I know to give more advice.

Ann
Posted 12/12/2013 6:04 PM (GMT 0)
Dear MuddyPaws,

Welcome to the forum. We are a group of patients and loved ones of those affected with liver disease...all kinds.

My co-moderator, Dany will be along to welcome you as well. Ann has given you a good overview. I am more knowledgeable about Hep C and liver transplantation, so I will leave you in the good hands of your AIH peers.

There are some good articles and websites posted in the Resources section just above the list of threads.

AND, you can click on the SEARCH button on the blue bar and put in a key word -- med or symptom, etc or the screen name of one of our posters, and the old threads will be sorted just by that key word. It is a good way to follow, say AIHer's old posts...she knows a lot!

Hugs,
Carol
Posted 12/12/2013 8:48 PM (GMT 0)

Hello MuddyPaws!

Welcome :-) 

How often will you be having lab work to monitor if your levels are going down?  It is best to have lab work done before any reductions in dose.  As Ann said, the aza takes up to a couple of months to really kick in so waiting til that point to decrease pred is a good idea.  Definitely ask about budesonide as there are far fewer side effects with it.  My hep had mentioned that it is becoming more common to start AIH patients off with that and also for treating flares.  The good thing is you don't have significant damage (well I'm assuming as you didn't state the severity of it from your biopsy only that it was inconclusive for AIH).

AIH is very treatable.  It is different for everyone and some folks have more side effects to deal with. AIH patients, when under control and responding well to treatment, can expect the same life expectency as anyone else.

Also, see if you can get a referral to a hepatologist.

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