Recently diagnosed with AIH

I was recently hospitalized for severe jaundice and the diagnosis was auto immune hepatitis (arrived at after the gallstones were cleared).

I had several gallstones in the bile ducts that were flushed out while I was there. I also had a liver biopsy
that revealed some scaring.

After I was released my bilirubin went down to almost normal, then sprung up again right after the antibiotics I was prescribed ran out.

I have been getting LFT blood work and seeing a gastroenterologist every couple weeks. He put me on steroids (prednisone). I feel a little better, and the fatigue has mostly gone away, but I am still jaundiced. I had a sonogram and the stones have not returned. I asked about the antibiotics and was told coming off them had nothing to do with the jaundice returning.

I am working, because I need the insurance and paycheck, but I hate it due to my appearance.
I stopped drinking (since the initial jaundice) and watch my diet.

I have done some reading on it, but was wondering if someone could tell me first hand what to expect and how bad this could get.

Thanks.

Hello Valynon and welcome to the forum!

What dose of pred did they start you on? So you know, I only took 2 days off because of AIH. That was when I went in for my biopsy. The fatigue was horrible then as my liver was tanking. My bloods were way off, bili over 20 and I wasn't clotting. Yet I still dragged myself to work as staying home would have made me crazy not knowing what was going on & I'm a single mom so not working would never be an option. Afterwards, even with all the negative pred side effects and feeling like I looked dreadful, I still went...I had to. I lived through it, you can too I was on high doses for a few months and those months were on hyperdrive, I barely remember them. On the plus side, once I got to 10mg/kg, things started getting a whole lot better. I can't complain at all as I've been very lucky with how I've handled the meds. I can thank my body for that, not the trying to kill me part

Has your doctor discussed starting you on an immunosuppressant? They are considered "steroid-sparing" drugs. So once they kick in, which can take a couple of months, if your LFTs are normal, they can start cutting back on the pred dosage.

As to what to expect...it's different for everyone. I have not been stopped or slowed down for anything. It's just a matter of taking some pills and seeing my specialist (I'm down to annual visits now with bloods every 6 months). Ann (AIHer) will probably chime in too. She's had a pretty good run with the disease as well. Some hiccups but she'll likely elaborate or you can search through our old posts.

One thing, take a picture now with your yellowness! I only have one and it isn't a good one. Whenever I tell people about it, they don't really get a good grasp of what being the color of the sun really means!

Thanks.

I actually woke up today to find I am less yellow, which is good, but the process of ridding my body of the bilirubin presents it's own challenges.


Fortunately I live near Yale, and the Gastroenterologists has already told me he plans to refer me to a "world famous" hepatologist there. I am due to for labs and a followup after Memorial day, hopefully bilirubin continues to drop.

Hi Valynon.

Welcome to the forum. I see our AIHer came to your side quickly. I hope you find a really good doctor soon who can put you on a regimen that works. Listen to the ladies...they know their stuff.

Hugs, Mama Lama