r/autoimmunehepatitis

Has anyone else had an atypical/uncertain AIH diagnosis like this?

I've had mildly elevated AST/ALT on and off since I was a teenager, usually somewhere in the 30s–70s. For years, the cause was never really clear. My bilirubin, ALP and IgG have been normal, and my ANA and SMA have been negative.
I've had a liver biopsy that showed mild inflammation but didn't give a clear-cut, textbook diagnosis of autoimmune hepatitis, and I don't have cirrhosis.
What's made things especially complicated is that my mom had autoimmune hepatitis and passed away from it a couple years ago- so my hepatologist has continued to consider AIH even though my labs haven't ever looked typical- and we have tested for just about everything. Nothing is blaring and answer.

A couple years ago, my LKM and mitochondrial/AMA testing were negative. More recently, my LKM came back borderline (24.2), and my mitochondrial antibody screen came back positive.

My hepatologist ultimately decided to treat me for AIH. I started methylprednisolone this summer, and my liver enzymes responded well. I'm now tapering the steroid and started CellCept (mycophenolate) 500 mg twice a day today as my longer-term treatment.
I'm still trying to make sense of everything because my presentation doesn't look like the classic AIH story I've read about and I HATE the thought of being on immunosuppressants long term when we aren’t 100% I actually have AIH. But I also don’t want my mom’s story to be my own because she didn’t keep up with going to her doctors.

Has anyone else had something similar—years of mildly elevated enzymes, negative autoimmune testing that later became borderline/positive, a biopsy that wasn't definitive, and eventually being treated for AIH?
I'd really love to hear from anyone who has gone through a similar diagnostic journey or has an atypical AIH story. 💛

Hi! I’m going to soon be put on prednisone by my doctor for AIH, however I’m really scared of the side effects. I’m someone who’s already very conscious about my appearance and although I am at a normal weight now, gaining any more would make me spiral. On top of that, I already struggle to sleep because of how busy I am and my work schedule. I’m just really worried this will have a horrible effect on me because apart from the abnormal blood tests, I feel alright, so I’m just upset I guess that I’m about to launch myself into a state of discomfort and feel like actual trash due to the prednisone when I feel fine now. Any suggestions/tips to get through it? Specifically the fatigue and suppressing the urge to overeat on the medication?

Has anyone experienced increased anxiety when tapering off budesonide? I started tapering about 5 weeks ago and my anxiety has been much worse than usual and I’m wondering if it’s related.

More of a vent if anything never properly said anything about this for the 5 years I’ve had it.
But I have no idea what to do always been on aza and off and on prednisone levels have been fine but have never actually felt even 60-70%. Symptoms have practically never gone away I cant work a full time job it’s just too taxing to the point where i recently lost my job because I just couldn’t function at the same pace as everyone else.

I’ve been really struggling with the thought of why should I even take the medication in my mind the medication is just delaying the end result really. The thought of taking it just repulses me i feel like if it was meant to be it was meant to be

Been off for almost 2 months now levels have shot up doctor wants me to start on prednisone again but im not sure if i can really go on with this🙂

Hello guys a little history I've had a liver transplant for the past 15 years everything's been going okay until 10 years ago when my liver enzyme started getting elevated I had biopsies done in the past but it didn't show anything regarding why my enzymes are elevated and it didn't show my liver had any damage but I now have another little biopsy about a month ago and it's showing grade two fibrosis. But again it doesn't show any specific cars like chronic rejection acute rejection virus autoimmune disorder maybe some minor things. But I just wanted to post this to see if anybody's been in my situation.

Are you kind of wish it was rejection or chronic rejection cuz I know there's a treatment. But in this case there's no treatment because there's no known cause yet. I'm going to see my hepatologist in about 10 days hopefully he'll try something like immunosuppression or something else just to give it a shot.

Thank you in advance.

I’m pretty new to AIH. I was diagnosed in early June after hospitalization. I started a prednisone 60mg and taper. Around 30mg the azathioprine was added and everything was fine. Halfway into my 10mg taper the symptoms started and now that I’ve completely weaned off the steroid I can’t take the azathioprine without getting sick. Nausea, vomiting, diarrhea, no appetite, stomach pain, irregular menstrual bleeding. I called my GI Friday morning and they were supposed to call back but haven’t yet. I’ve reached out again today but I’m wondering what your guys’ experience on aza has been. Do I just need to ride it out? Were you prescribed something else? I’ve tried taking it with food and without. Tried morning and night. I haven’t tried splitting the dose because I read you’re not supposed to cut or break the pills so I’m trying to get a smaller dose prescribed, currently on 50. Any advice or support is appreciated. This new hurdle has been a struggle mentally and physically.

I got a letter from my hepatologist back in May saying I’ll need treatment and he’s arranged for a liver biopsy. Since then he’s rescheduled my consultation with him twice and I’ve phoned up the liver team number and they have no idea where my biopsy appointment is and to just wait another month to talk to the hepatologist. My liver pain is getting worse and I’m so worried but everyone keeps saying just wait.

Hi everyone, I have autoimmune hepatitis and I’m wondering if anyone here has managed to lower their liver enzymes by making changes other than medication.
I’m especially interested in things like diet, lifestyle changes, supplements, or anything else that you personally found helpful.
I’m not looking to replace my prescribed treatment, just curious to hear about people’s experiences and what made a difference for them.

I (35/F) was recently diagnosed with AIH though my liver enzymes level aren't high (ALT 23 AST 40 IGG 20.75 ALP103 GGT52).

I found out I had pancytopenia in May2026 (mid July counts: low wbc 1.7 rbc 3.6 and platelets 60) and did a bone marrow aspiration (cleared) and bunch of blood work up. I subsequently did a fibroscan which shows liver cirrhosis and transjugular liver biospy which shows signs of AIH. I'm Hep b c - and done autoimmune tests (SMA- ANA 160) and did an OGD for EVL. The hepatologists concluded my case was not straightforward and i have AIH with liver cirrhosis (and portal hypertension).

Just started on Prednisolone 20mg (step down gradually for 1 month) and azathioprine 50mg last Wed (2 weeks). I raised my concern of worsening blood counts as a side effect but Dr says my condition needs to be treated and will need close monitoring, MMF or tacrolimus aren't as effective.

So far i feel tired and no mood to do much, finding it harder than usual to concentrate. While at work, i am mostly on autopilot mode...Prednisolone had also caused some blood sugar spikes (I am also diagnosed with T2 diabetes in May 2026).

Does anyone here has non elevated LFT with AIH? Or existing pancytopenia condition with AIH? Does Azathioprine really worsen blood counts? 🙏

After a handful of years with mildly elevated LFT’s and finally a biopsy it looks like my GI doc is calling it. Digging through all the posts here and going down the rabbit hole for treatment, I’m landing on advocating for cellcept as opposed to Aza. I know Aza seems to be 1st line, mostly due to cost and insurance push back. Curious how many people started out on Cellcept and who have received push back on insurance.

Hi, I am a 20 M and currently taking tacrolimus 9mg/day for the past 6 months. This all started from a random blood test completely unrelated. No family history related to liver stuff. Waiting for a result on a genetics blood test.

Previously tried various concentrations of Prednisolone and then moved to azathioprine. Side effects of prednisolone were awful so I had to stop but long story short, its been a bit of a rollercoaster on the blood tests and still no medication to have taken my LFT to a normal level. Taking URSO for the entire 4 years and still continuing.

I used to get no side effects but now i experience random itching very often which i take meds for too.

Two biopsies; neither had cirrhosis and just mild inflammation of liver.

Thought tacrolimus was working until my LFTs shot up today and I am lowkey losing my mind.

I still struggle to even look at my blood tests every time. I have never drunk alcohol, smoked or done drugs. I go to the gym 4 times a week and used to run so my health has been on top for the entire time, currently 73kg and 5’10, like wtf am i supposed to do and why have I been blessed with ts? My diet is also healthy, no snacks just a solid amount of protein.

Recent ALT levels roughly a month apart:

322, 268, 252, 247, 134, 199

I have taken a huge mental toll which I still do not think i have fully recovered from this, seen a few therapists but still cant get these feelings of fear away properly. I really just want this entire thing to piss off but I dont know what to do.