r/autoimmunehepatitis

Ever since I got diagnosed with aih I’ve been struggling with body dysmorphia, im currently on prednisone 7.5 mg/day and im struggling with severe moon face, is there any way to reduce the puffiness?

Got a liver transplant 4 months ago, liver was in a bad state but for the first time in 10 years (20yo male) my liver numbers are in the green and I have a fully functioning liver!

I had an unknown liver injury in December 2025 and have been on prednisone since.

At the hospital, my AST was 1348 and ALT was 1471. No tests clearly showed autoimmune hepatitis, test after test, all just nothing. I was told that since everything came back negative, they were going to “treat me as if I have autoimmune hepatitis.” and "You will be taking Azathioprine for rest of your life"

That has felt like a moving goalpost.

When I came home and restarted my normal prescriptions, my ALT shot up to 1619. I stopped those meds, and my numbers immediately started going back down. At that point, I was diagnosed with drug-induced liver injury.

The biopsy came back inconclusive: maybe drug injury, maybe autoimmune hepatitis.

I did a 6-week prednisone taper, but it didn’t really work. When I got down to 10 mg, my numbers stalled, and without prednisone they started slowly rising again.

My doctor then immediately put me back on 60 mg prednisone. When the numbers went down, they response was basically, “See? You have autoimmune hepatitis.”

But from my perspective, we had been at ALT 1600 less than 6 weeks earlier. The numbers were never normal. So I’m sitting here wondering: couldn’t my liver still just be damaged and recovering? I just need to be on prednisone longer, we should try a longer tamper?

Conversations with the doctor have felt pretty pointless. It feels less like we are discussing my situation and more like, “We don’t talk through this with patients; we follow procedures.” I guess I understand that to some degree, because my liver was failing and I was close to being flown to a transplant center. But I still feel confused and possibly misdiagnosed.

I have received almost no explanation or info on side effects of this drug, what to watch for, what to avoid, or if food or empty stomach. The prescription just showed up.

From what I’m reading, azathioprine can be tricky. For those who have taken azathioprine for autoimmune hepatitis or liver-related issues:

Do you take it with food? Is there anything I should avoid during the first couple months? What side effects or warning signs should I watch for?

How often were your labs checked when you first started? In reading the lab order, they are going to check every 2 weeks. Which google says each 1 week for first 2 months. Like I said, no information from doctors really. I get to see a nurse pratication in 10 days.

History: A little over two months ago and 2-3 months after starting a new medication and some herbal antimicrobial supplements, a routine blood panel showed I had elevated liver enzymes for the first time ever (highest a little over 100). I retested six weeks later and my ALT and AST had shot up into the high 700s and 400s, so I had a liver biopsy the following week with results that could be either acute onset AIH or a drug-induced liver injury that mimics AIH.

My hepatologist wanted me to begin a course of steroids immediately, but then did another hepatic panel to establish a baseline before I started taking them and my ALT and AST had dropped by 70% in a little over two weeks after discontinuing the suspected drug, down to under 200 for both. The suspected drug has a terminal half-life of 4-5 weeks, and other than the ALT and AST my only abnormal blood tests were a positive ANA titer (320), so she decided to hold off on beginning steroids and retest in a few weeks.

Anyway, I'm really upset about the diagnosis and probably having to take immunosuppressant medication for the rest of my life, and also not holding out much hope that this is DILI rather than a drug injury triggering or unmasking AIH--it sounds like statistically the odds of the former are very low, and my hepatologist said she's seen exactly one case where suspected AIH turned out to be DILI in her entire career. Obviously I have no way of knowing yet if my liver enzymes will even return all the way to normal levels in a few more weeks without treatment, and even if they do, whether they'll stay that way and what that might mean--and I'm really struggling with that uncertainty more than anything else right now.

To be clear, I think it's much more likely that I actually have AIH--possibly triggered by a drug injury--because I also have autoimmune thyroiditis as well as at least one other autoimmune condition plus an unspecified gut dysbiosis (possibly due to Long COVID?), but it would still be so much easier to know one way or the other. Like, it will still suck no matter what, but then I could at least begin to fully grieve and move forward with seeing how I respond to treatment and meds and trying to accept my new normal, rather than having any hope that I might get incredibly lucky and turn out to be a super rare case of DI-AIH.

I do realize those rare cases probably wouldn't still be hanging around here after they turned out not to have this diagnosis, but I guess I'm also just wondering if anyone else has gone through, or knows someone else who has gone through, a similar scenario, and what ultimately happened? Or any other advice you might have for someone in a situation like the one described here. Thanks in advance!

Hi, I’m a 29F, was diagnosed with AIH in January this year. I’ve started on prednisone in February, a week on a higher dosage of 21mg - best week, felt energetic. Then went to 15mg and after a month started on Aza 50mg. Prednisone only was not able to lower my lab results of AST / ALT, but after a month on Aza it did lowered down.

At the beginning I thought I was going to die, specially when prednisone only didn’t work. It was tough waiting for one more month, I felt so so anxious. But now that I know Aza is working I haven’t been feeling better... I mean, I feel depressed. Sometimes I just want to stop taking all the meds, but I know I can’t. Idk if the depression is bc of prednisone or if it is bc I’m struggling with the diagnosis and grieving for my old life before the disease. I miss not knowing about the disease at all, I was just fine, living my life as usual, and now I feel depressed, I have nausea almost every day, I feel tired even though I spent my day watching TV and walking with my dog for 15 minutes. I miss alcohol, the taste of it, going to a pub with my friends.

How long did it take for you to accept the new life? I mean, I’m on psychotherapy, I even increased my sessions to 2 per week, but it’s not getting any better.

Hi just wondering if anyone else here smokes weed and what their specialists said about it.

Because i smoke, recreationally and i wouldn’t call myself a stoner, but i didn’t know if affects inflammation and the immune system quite a bit. Just wondering if anyone uses it in a more medical sense.

I’m going to talk to my specialist soon about it :)

Hi everyone 🌿

I think the choice of antibiotics and painkillers is really important for people with autoimmune hepatitis, especially during dental procedures like tooth extractions, implants, or root canals. Unfortunately, not everydoctor seems fully aware of the liver related risks.

What do you personally pay attention to during these treatments?

Are there any medications you consider safer, or any that you specifically avoid? 🙏

Hi,

I have 5+ autoimmune disorders and their offshoot problems. I’m considering trying to get T cell therapy (getting my body to stop attacking itself) abroad.

Has anyone considered this? know anything about it?

Thanks!

Hello! I started myfortic on Monday and cut my prednisone from 10mg to 5mg. Today I wake up and my whole right side of my abdomen aches. The fatigue is sudden and off the charts. Is this the pred withdrawal or myfortic? I have been on prednisone since September. 7-8 months.
I was on AZA for years off and on until it made my bone marrow toxic.

Anyone else go through this?

I was recently diagnosed and started aza only 2 weeks ago and literally within a week I got horribly sick and have been to urgent care twice and am on two different antibiotics for sinusitis and conjunctivitis. Is this how being sick is going to be for the rest of my life? I’m so scared for my quality of life with this diagnosis :(

Hi everyone, I’m looking for some insight from anyone dealing with AIH/PBC overlap.

I was diagnosed last year based on a FibroScan and bloodwork (ANA 1:1000, AMA 1:3200, and LFTs 5x the normal limit). I’ve been on Budesonide and UDCA for over a year, plus Azathioprine for the last 10 months.

I finally had a biopsy two weeks ago, and while it confirmed fibrosis and AIH-like damage, it came back inconclusive for PBC. Now I’m questioning everything. Is it possible it’s just AIH? Or is the biopsy just missing the PBC markers because the damage is patchy?

Has anyone else had a biopsy contradict their bloodwork? Should I push for a second opinion/biopsy at another facility, or just trust the original diagnosis?

So about 6 weeks ago I got extremely ill with a stomach bug. About 4 days later I can't get my pee clear and I'm a big water drinker as I am very active. Well my liver values aren't super high but my bilirubin has climbed from an 8 to a 9.9 to an 11.6 to now 17.9. I did a liver biopsy, they can't seem to figure it out. I just barely tested positive on the smooth muscle antibody test. He started me on 40mg Prednisone a day to try and relieve the inflammation in my liver and spleen. Anyone see a situation like this before?

I had my liver biopsy done this morning and it was incredibly painful during the procedure. They had to double my meds through my iv. After the procedure they gave me a painkiller pill and i had relief for a couple hours. Now im home and I feel a constant stabbing pain at the bottom of my right ribcage. The kind of pain you get from a side stitch when you run, except its constant and going on like 7 hours now. It let's up only if I lay on my left side.

Was anyone else's experience also like this? I have been reading online that it was quite painless for everyone else. Just wondering if I should be concerned or if it is just because of the inflammation I've had on my liver or something. Thanks in advance

Has anyone ever had a positive AMA-M2 result, bile duct injury/loss on liver biopsy, normal IgM results and normal ALP results and only diagnosed with classic AIH type 1 and no overlap of PBC? Please let me know as I’m deeply concerned and getting conflicting information online.

My Mother is diagnosed with Autoimmune Hepatitis. She is taking prednisone for 2 years now. Current dosage is 2.5mg alternate days alongwith Azathioprine 50mg daily. With this treatment, her liver disease is in compensated state but she is not able to walk properly and there is a lot of pain in her both of the knees. We went to Ortho and doctor said it is meniscus wear and painkiller is the only non-surgical solution to provide relief. Now, as the liver is already sensitive and weak, we cannot give strong painkillers to her and due to this, she is not getting much relief. This is really frustrating for me to see her like this because walking is the basic freedom and she is totally blocked. Can anyone please help here by providing some inputs? Also, does anybody going through such osteoarthritis?

Hi everyone, how are y’all doing? I’m seeking some logical insight.
My AIH labs are finally great (ALT down to 50!), but my quality of life is tanking. Ever since I hit my full dose of aza alongside budesonide, I’ve been struggling with fatigue, dizziness (feeling like I’m on a boat, especially indoors) and my HR jumps to 130 bpm just standing still (cooking/working), plus sudden heat waves and tremors.

Strangely, I feel better while working out (moving) than standing still. I feel like my autonomic nervous system is haywire hahahah

Has anyone else experienced dizziness or autonomic dysfunction on this combo? Could it be a side effect of Aza hitting full regime or a mineral imbalance caused by the steroids?

Thanks for any shared experiences! 🌸✨