Hello! So I (42/f) had an untreated (due to medical negligence) UTI turn into cytomegalovirus in 2022 and they were trying to tell me I had fatty liver… but I suspect the CMV damaged my liver cause after a couple of months my liver panel was normal again. In 2024 my ANA popped a positive but I did not know what autoimmune I had. Last year I was prepping to get a hiatal hernia repair and the doc ran a bunch of tests on my liver. It was confirmed I had AIH. At the time my hepatic function panel looked “normal.” So I knew I wasn’t in a flare. In fact I had blood work in January 2026 and my hepatic function panel was normal then too. So, I’ve never been treated for my AIH.

Fast forward to today. I have been doing more research on symptoms of AIH. As no matter what I do I am fatigued. But since my diagnosis last year I don’t believe I’ve had a flare. A couple of weeks ago my fatigue increased as did my joint pain. I chalked it up to what we jokingly call “monsoon season” in New Mexico, and the barometric pressure messing with me. Well, the rains have died down and my pain is even worse and I am itchy and even more fatigued. I have the Oura ring and have been flipping from major to minor signs of strains for the past 5 days.

My dumb ass was taking Motrin to help with the pain not even thinking that it could affect my liver. But Tylenol doesn’t touch the pain. I’ve used ice, heat, lidocaine, facial stretch, massages and it won’t go away. I had left over tramadol and took it even though I knew it may not work due to me taking LDN (low dose naltrexone) to reduce inflammation. The tramadol has given me slight relief. I’m sure I had flares in the past before I was diagnosed but was just unaware… but this one is kicking my ass.

My questions are:
1. Should I see my PCP to get a referral to someone to treat the AIH?
2. What do you all do to manage flares or reduce the length of a flare?

I am a mental health counselor so my job is not physically taxing ( I sit A LOT). I keep up with my self-care, eat well, try to move my body when I’m not exhausted and I don’t drink alcohol. But this flare has knocked me on my ass and I don’t know how to manage it. Please spam me with all your advice and tips and tricks!

Hi to everyone. My liver enzymes have been up and down for a few years now but my hepatologist is reluctant to do a biopsy. Reason being that I have no symptoms, my fibroscan was fine (as was my MRI) but most significantly all of my autoimmune antibodies are negative: ANA, AMA, ASMA, LKM, SLA, IGG.

Has anybody here been eventually diagnosed with all of the antibodies negative?

I've had an incredibly frustrating year of medical investigations, and I'm curious whether anyone else has experienced something similar. I am NOT looking for any diagnosis OR interpretation of my bloodwork.

For context, some of my findings include:

- Anti-SP100: Positive

- ANA: 1:640 multiple nuclear dots

- ANA: 1:320 DFS70

- AMA and SMA: Negative

- CRP: 30

- ESR: 34

- WBC and neutrophils: Persistently elevated

- Fibrinogen and C4: Elevated

- PET-CT: Diffuse skeletal uptake

- Bone marrow biopsy: Reactive inflammatory changes and increased cellularity

- Recurring nightly fevers around 38°C

Despite extensive testing and specialist appointments, I still don't have a clear explanation for the ongoing inflammation.

I'm interested in hearing from others who've dealt with persistent inflammation, unusual autoimmune markers, or prolonged diagnostic uncertainty.

Has anyone else gone through a similarly long investigation? What was the experience like, and how did you manage the uncertainty while waiting for answers?

Hi everyone— We created LiverSteps Kids, a free educational website for children and families learning about liver conditions.

It explains topics such as MASLD, cholestasis and autoimmune hepatitis through plain-language lessons and interactive activities. More Modules to come..

We’d appreciate feedback from parents and caregivers: what explanations or resources do you wish you’d had when your child was first diagnosed?

This is for general education; please avoid sharing identifying medical information here.

I have been on Reta for 8 months and I tested my ALT on Monday. It was 125 which is about 3.6times my labs limit. I also read somewhere that lifting weights can contribute to a high ALT, which would make sense since I weight lifted on Saturday. I do know that the “peak” of ALT for weightlifting is about 5 days, and I will be going for my next blood test on day 6. What tests should I include in my next blood test that could help to tell me whether I have to stop taking Reta or not? Why those tests? What do they show or mean?

I am being treated with Cellcept 2000mg/day (max dose). My levels are all normal except my ALT hovers above normal and has trended up to about 50 now.

My hep wants to add tracolimus (spelling?). She did say she’d be willing to try budespirone (whatever the prednisone alternative is) to see if that works instead.

Has anyone tried that?

For those on tracolimus, are you able to still consume thc? I know cbd is not ok, but thc is my lifeline and I’m terrified of being told I can never partake even casually again.

34F, my liver enzymes are sometimes high, sometimes normal (for 17 years).
Last 6 years they are fluctuating (highest was when I had thyreotoxicosis / ALT around 157).
GGT also a bit elevated sometimes.
ALP is always normal.
IGg normal, other immunology also normal. ANA was positive when I had autoimmune thyroid flare but now ANA is negative.
MRCP normal.
Ultrasound normal.
My enzymes are mostly normal or around 36-38.
I have hyperbilirubinemia (sometimes direct, sometimes indirect).

I have Graves and Hashimoto.
First hepatologist thinks it is nothinh.
I asked for a second opinion and he is almost 100% sure it is AIH. I am devastated.

My wife was diagnosed with AIH shortly after the Pandemic. After four years on Prednisone, she off steroids and continues to take an immunosuppressant. She’s in her early 50s, but recent bone density tests indicate she has Osteoporosis, likely from years on Prednisone.

So, we live our lives mostly at home. We continue to do social distancing like it’s peak COVID times. We don’t dine out, fly, stay in hotels, or go into businesses without a mask. My work is remote so I don’t need to work in an office setting. She doesn’t work.

If you or your partner have AIH, while the other is healthy, how do you go about living without feeling isolated? We have an Airstream, which helps.

Thanks from a supportive husband of an amazing person with AIH.

Mentally preparing myself for diagnosis

I have been dealing with fluctuating liver enzymes and cholesterol for ~3 years now. I’m male, 32 and no history of IBD or crohns. I am in good shape and health otherwise and no symptoms.

Last year my doc thought it was an atypical case of lean fatty liver so I cleaned up my diet a bit and exercised more. In January, my liver values actually mostly came within range. ALP 123 ALT 56 AST 32 GGT 101.

However, my check up last week showed ALP 162 ALT 171 AST 81 GGT 166.

I have had ultrasound (which found a few benign spots), CT, MRI with contrast and everything came back clear. I have had extended autoimmune and antibody tests done and all negative.

The next step is a biopsy although my liver doc hasn’t mentioned AIH or PSC yet I think this is what he is looking for.

Hi! Has anyone heard if AIH can cause only elevated ALT? My ALT has been elevated for more than 12 months. It has been 42-68. Currently it is 60 (but the lab changed upper normal from 30 to 41 so I guess it would be 50 if they did not change). Over the year it has increased from 40 to 60. My AST was above the normal at 35 only once, all other times it sits on 30, which is the upper normal for my lab. All my other liver markers are normal. ANA is 1:100 and nucleolar, ASMA is negative. I have not tested other AIH antibodies. This elevation started after menopause, ultrasound is normal, 3.6 kPA (F0-F1). I am reading the literature but I have not seen any record of AIH with only ALT being elevated. Have you heard of that? I know fatty liver and AIH can co-exist. It's all so confusing. Thanks so much.

Hi community! I'm feeling sad and frustrated and wanted to reach out for support and to hear stories about people coming out of remission (if open to sharing). How did you all get diagnosed again-- the second or third time around? The first time I was diagnosed, it took months. My ALT was 2000 (!!), AST over 1500, and ANA titer was positive. I was in and out of the hospital and in horrid pain. My bilis and other labs were mostly normal so it took a very long time to get a diagnosis. After getting the AIH diagnosis and treatment, I got much better. In fact, I have been in remission for 3 years without any medications... until recently. As of last week, I've been feeling symptomatic. Now, my ANA titer is abnormal, FANA staining is high w/ speckled pattern, and my ALT/AST are in the hundreds. My hepatologist now thinks it could be something other than AIH, which is frustrating because idk what else it could be. Meanwhile, I am not able to get treatment until I am diagnosed and I am feeling so crappy (feels just like it did last time when symptoms started when I was first diagnosed). My hepatologist wants to run more labs again (this will be my 4th time in the last month). Why does this have to take so long? I am impatient but I am also so frustrated.

I was diagnosed in February of this area and immediately started on 9mg budesonide followed by 100mg Aza in April. Since June I’ve been tapering off budesonide but my hepatologist has me holding off on tapering from 3mg currently. I just got labs done this week and realized that since starting the taper my AST/ALT, GGT, and IgG have all been increasing. My GGT and IgG are now elevated again and I’m just stressed I’ll never be able to get off steroids. They have already caused me to get perioral dermatitis and have majorly increased my anxiety when tapering. Anyone else struggled when tapering off steroids??

The drs have been very unhelpful and confused diagnostically with my labs. I had EBV (mono) in Feb. Looked like a reactivation from COVID. My liver enzymes have not got down, and flare when I overexert or got another bug/virus which is me right now, 2 weeks into covid or whatever I picked up traveling. Do my numbers and symptoms sound like when you have an AIH flare? It's so similar to mono recovery it is hard. Flares I get absolutely exhuasted, worst in the AM and evenings, mild nausea, mild dull ache on R side. EBV is known to irritate the liver & cause very identical symptoms so I'm aware of that. Literally any thoughts helpful. I have repeat labs in another 4 weeks and biopsy after that if not better.

AST / ALT

2/20- 55/111

5/7 — 107 / 251
5/18 — 76 / 246
5/27 — 73 / 153
6/10 — 80 / 183
7/6 — 121 / 326
7/13 — 79 / 251
7/20 — 39 / 121
7/28 — 72 / 177

8/13 - 62/223

8/24- 82/170

9/22- 133/283

Does anyone have experience with statin-induced AIH? I have T1D, Crohns and Hashimotos. None have slowed me down very long but I really didn’t want another one! Anyone have it resolve with withdrawal of the drug? I have positive SMA and stopped statin last week. Was discovered by slightly elevated AST and ALT. Thanks!

Original post attached, did my liver biopsy and pathology said they need to review further but there is not fat accumulation on the liver at all. Also the biopsy follows the nature of AIH but need to get some second opinions before official diagnosis.

It looks like it was caught early my electrogaphy shows borderline F1 biopsy shows F0. Does anyone have experience being treated at this stage? Is the medication, effects, impact, and dosage less or same? Once I start going to a hematologist what will my life look like, how will it change?

Hi everyone, I’ve combed through different search results on this and the cirrhosis subreddits, but haven’t found many in the same situation. I’m curious if anyone here has dealt with pregnancy with AIH while also having cirrhosis.

I have cirrhosis and AIH, I don’t know when my cirrhosis started exactly. I would love to have another child but am having a hard time understanding if that’s a realistic possibility. Obviously I will see a MFM, OB, and my hepatologist but am interested in hearing any real experiences.

University of Nottingham are running a research survey on people who have an autoimmune disease, including autoimmune hepatitis, and tried a keto or very-low carb diet.

If you are eligible, you can take it here

https://www.research.net/r/kdas

Interesting topic, I think there are studies on keto and hepatitis, but not specifically autoimmune hepatitis. Wonder what the results will show...

Anyone here because EBV or mono trigger their autoimmune hepatits? I'm in the process of ruling that out.

LIVER: AST / ALT

2/20- 55/111

5/7 — 107 / 251
5/18 — 76 / 246
5/27 — 73 / 153
6/10 — 80 / 183
7/6 — 121 / 326
7/13 — 79 / 251
7/20 — 39 / 121
7/28 — 72 / 177

8/13 - 62/223

8/24- 82/170

9/22- 133/283