New Member--Automimmune Hepatitis

I lurked on this website for months last year...am only now optimistic enough to participate. Will try to be succinct. I live in the USA.
I had a positive ANA a few years ago, SCL-70 (Scleroderma antibodies) but only symptoms were some joint pain with radicular pain down left leg. Fast forward a couple of years and I'm diagnosed with Sjogrens and started on Plaquenil (which was helpful for a while.) A few months after that I started having constant nausea, vomiting, profound fatigue. Gall bladder was removed (I think for nothing but after months of nausea, etc. I was desperate and my PCP pretty much bullied me into it)....no alleviation of symptoms. I had EGD and colonoscopy which were normal, gastric emptying study, abdominal CT--all normal-- but in the meantime my liver enzymes started going up. The GI doctor that my Rheumatologist referred me to told me he thought I might have autoimmune hepatiis, set me up for some more blood tests and a liver biopsy and 10 mg of prednisone daily. I had the biopsy (which was excruciating, don't mean to scare anyone who has one pending but it was) and when I called for results I found out the GI doc had left his practice and temporarily dropped off the map. Fortunately the assistant for one of the other doctors was willing to help me out and got the results to me eventually. The biopsy report stated "focal liver cell necrosis; no evidence of fibrosis or chronic inflammatory changes." After that I began to have one acute illness after another.
When I took my biopsy results to the Rheumatologist, I was seeing his PA and telling her what all had been going on and that the only thing that was helping my nausea, etc. was the prednisone. She said "I think you might have autoimmune hepatitis" and went for the doctor. So, more than a year after I started having all these wicked symptoms and constant illness and FMLA, I got a diagnosis. I was immediately started on 40 mg prednisone/day (liver enzymes were quite high) which was tapered 10 mg per month. The GI and Rheum both said they hoped to get me below 5 mg/day but every time I try to go below 10 I hit the wall as far as how I feel. Last blood tests were at 9 mg and enzymes were ok. I'm only trying to taper 1 mg/month but I've been stuck at 9-10 for months. I've been trying 8 mg this month but it's been tough--lots of joint pain and pain in my right side. I'll feel almost normal for a few days--manage to make it to work for a couple of weeks--and then be flat on my back for a week. This cycle has repeated over and over and I'm really discouraged. The relentless nausea is the worst. I quit taking plaquenil because it seemed to make the nausea worse and am on Imuran 50 mg/twice a day and the 8, 9, or 10 mg prednisone. I've gained 25 pounds, my face looks like the moon, my skin is terribly dry, and I've lost a good portion of my hair. I have seen on this forum that some people don't tolerate Imuran but since I've been nauseated for all this time how can I know if something else would help? Also,it's so upsetting that my super thick curly dark hair has become white, fuzzy, and thin.
THANK GOD FOR MY HUSBAND! I absolutely could not manage without my husband! He has taken on practically every household chore and continues to support me in every way he can--he cries with me, prays with me, and never fails to show me how much he loves me.
Fortunately my director at work has been very tolerant. I can work from home if need be. I don't know if I can get disability but I'm almost to that point--emotionally and mentally I'm just shot.
So, maybe not so succinct but there it is. Advice anyone? I am now 2 years ill.

Post Edited (Smokin'hot granny) : 3/15/2014 7:31:00 AM (GMT-6)

Hello SHG!

Welcome to the forum! Sorry for not hopping on this AM...Had a nice day with my teen and her friend. You were well looked out for as a couple of folks shot me an email to check in
Sounds like you've been through a bit. I take my full 100mg of azathioprine (Imuran) in the morning...I've never split my dose. That may help your body adjust to the nausea. I only had nausea from the aza initially as well as hair thinning...then that all got better.
I did, however, start aza (50mg) while I was on 750mg of CellCept and 7.5mg pred (I actually added it the day I dropped to 7.5mg pred which was 3.5 months after I started all of it). I was very ill on initial presentation and CellCept (mycophenolate mofetil) is very fast acting...so once I was stable on 40mg pred and CellCept, my wean started.
One very important note is to not decrease pred if your enzymes are not in normal range. So when you say your enzymes are OK, do you mean lower or actually normal? The majority of folk who experience joint pain, experience it when weaning too quickly.

How often are you having blood tests? You should definitely have one prior to each wean...not just a random drop 1mg/month...bloods have to be normal before each drop.

What also concerns me is your scleroderma result. Have they also diagnosed you with scleroderma? That could cause joint pain as well.

As per the intolerance of azathioprine, there is a test they could do to make sure your symptoms are not because you can't tolerate it. I've never had it as I haven't had problems but I know of others who have had the test prior to being prescribed aza. It's the TPMT test. From that they can determine if you can metabolise the drug and what your optimal and highest tolerated dose would be. My understanding is that if it isn't tolerated, you would definitely know as your symptoms would be severe nausea, vomiting and possible pancreatitis. With all that said, you can still speak to your doctors about trying something else (6-MP, CellCept, Tacrlimus). There are others if those don't work.

I would also request a referral to a hepatologist. GI docs are helpful but it is best to be under the care of a hepatologist.

I'm sorry to hear your biopsy went poorly...that isn't the norm but I have heard of others who haven't been lucky. Also, if you can eventually get to below 10mg of pred...that's when my physical symptoms started improving as well as my ability to sleep. I too gained weight...45lbs!! I had the moon face as well as a hump on my upper back

Just a couple of things I'd add to the replies you have had.

The test for tolerance of azathioprine is far from perfect. My TPMT test came back negative meaning I should be OK on it. I developed headaches so bad they thought I had meningitis. So I switched to mycophenolate (CellCept). I have found that great although it did take a few weeks to work. (Dany - interesting you were told it worked quickly - I was told it took a few weeks and indeed that was my experience. Guess it is another AIH thing they don't understand!).

They started reducing my pred as soon as it was clear my results were dropping - and they monitored me closely. I was one of the unlucky ones whose side effects didn't go until the pred stopped completely. When I needed steroids again I was given budesonide whose side effects were far far less. May be worth asking about that.

I did find it took a few months to feel better so hang on in there.

Ann

I go to the rheumatologist every month and my labs (CBC, ESR, CMP) are checked every month and must be in the NORMAL RANGE before I can decrease 1 mg pred. I am a lab technician so I understand what's going on lab-wise. The last time I tried 8 mg, my enzymes went up and I had to go back to 10 mg. When I saw the rheumatologist in January I was scheduled to come back to see the doctor in 3 months with nurse visits in the interim for pain meds. Since I'm having so much chest and right side pain right now, I'm going to do a CMP at work on Tuesday and I'll call to get right in if liver enzymes are elevated again. I've seen mention of budesonide on this site but I'm not familiar with it--I'll ask.
The doctor says I have no symptoms of scleroderma (thank goodness!)...I've had the pulmonary function tests and a special CT for pulmonary embolism. He did mention Lupus one day and when I quizzed him about that he just kindof shrugged...don't know what that really meant but it hasn't come up again. However, all the autoimmune diseases are first cousins so nothing would surprise me at this point except I don't want to have to start worrying about my kidneys just yet. I just want to get this prednisone down! If I still have to take 1-2 mg/day that would be tolerable. I keep challenging this place where I'm stuck and keep failing. I want to get better!
I know there are lots of people in terrible situations--I see that on this site and my heart goes out to them. It also scares me.