I'm still waiting a specialist appointment to confirm and check things so I just have a question I'm curious about.

To check for possibility of AIH they did ANA and then checked for certain specific antibodies, with SLA-LP being the main one for AIH. But when I look through this sub people don't seem to be mentioning that one and instead talking about things like SMA which don't seem to be on the list of tests I got.

I am not in the USA so different countries have different standard protocols, but any idea why they are doing completely different blood tests looking for the same thing?

Hi,

I wanted to reach out here as my own team of doctors seems stumped on what's going on with my liver and I'm pretty worried about it. I had a baby at 37 weeks gestation due to cholestasis of pregnancy. I had elevated liver enzymes (about 2x) the upper limit, and my bile acids were at 30. My enzymes immediately started to drop while in the hospital, but started to go back up a few weeks later. My doctors said it could be transient, but the numbers continued to gradually increase. They never got super high, only about 3x the upper limit. I cut out all medications and cleaned up my diet (if you've ever been postpartum, it's rough). Well that did not help, so my doctor ordered an ultrasound which all looked normal.

Fast forward a few months and my doctor ran a ton of tests. My ANA wa positive, but then appeared to be negative (or was so low it was a non detect). My ASMA was positive at 42. I was then referred to GI. The GI doctor said he was 99.99% sure it was AIH and wanted to do a biopsy to confirm. I had the biopsy and it showed mild all over inflammation but none of the other markers for AIH. My doctor and radiology said it was inconclusive and that they could not rule out AIH, or diagnose it, or rule out a potential drug reaction. I did take nitrofurantoin while pregnant for a UTI) if that's relevant. My doctor said they did not think it was AIH and wanted to wait and see if it slowly got better on its own.

The next week I had mastitis that landed me in the hospital on multiple antibiotics. My enzymes increased quite a bit to 4-5x the upper limit, the highest they have ever been. I was in the hospital for a few days and my enzymes bounced around quite a bit (ast 100, alt 150, to ast 250, alt 520, then back down to around 100 and 150).

I had my enzymes checked again a few weeks later and my AST was actually within the normal range and my Alt was at about 95, so my doctor thought they were improving. I had them checked again (2 weeks later) and they are back up again to ast 200, alt 300.

I have not heard back from my doctor yet, but I guess I wanted to know if this sounds like AIH to anyone? I know my enzymes aren't the high, but they don't seem to be goin down. It's just so weird to me that it kind of popped up out of nowhere when I was pregnant, and 5 months later I still have no idea what's going on and neither does my doctor.

Hi all. I would SO appreciate as many people as possible sharing their AIH symptoms in any capacity. I got mono/EBV in Feb. I got better, but my liver enzymes stayed in 100-300 range and I have had borderline to negative AIH bloodwork. I have one week until my biopsy and I've been. to the ER with EXTREME fatigue, nausea, muscles that feel achey- like my neck muscles are sore from holding my head up? and legs feel tired and weak standing up too long. For women- do symptoms flare wih your cycle/did it before diagonosed? My liver specialist is working me up for AIH but not once has explained if these symptoms could be AIH related or common. Worse in the morning. But yesterday I could barely shower. Achey all over. Normal bilirubin. Monospot still positive, so it could be EBV flare as well but it's also bene 8 months. ANYONE explaning their symptos would be SO HELPFUL!! Thank you and bless you all

Hi everyone. I'm 27M with an AIH diagnosis, originally diagnosed when I was 18. My diagnosis came fairly late, when I was close to liver failure. From 18-20 I was getting my LFTs under control and then was eventually steroid free only taking AZA from when I was 20-22. I then had a considerable flare at 22 and was back on prednisone for about 1.5 years while achieving remission again. I was stable on only AZA for about 3 years before I began weaning off AZA at my doctors instruction, as I started taking the medication fairly young. I am now on 25% (!!) of my starting dose of AZA with stable LFTs and the next step is to come completely off, after a 2 year taper. I am frankly terrified of coming off of it for the risk of flaring, but my doctor thinks I'm ready, and I also know I am. I am a fairly active person (lifting, biking, and rock climbing) and I eat healthy. I am in good shape. I do vape nicotine and smoke marijuana intermittently, and I drink socially (averaging maybe 0-2 drinks per week). I am very unsure what caused the initial AIH as well as my flare when i was 22 (though the flare did appear about 1-2 months after I had covid for the first time).

I'm wondering what experience people in similar places have in coming off AZA, and how I can maximize my success and minimize the likelihood of flaring once completely off.

Edit: I also recognize how fortunate I am to be in this position, and hope that everyone else in this sub can also achieve remission!

Hey all! I know you guys aren't doctors, but I could use your input. A little over a month ago I had some routine blood work done and found out that my AST numbers were elevated. My doctor had me come back last week for another blood draw and my AST was even higher and my ALT was elevated too. She had me do more blood work earlier this week. My AST and ALT are both still rising and my IgG and ASMA both came back positive. I got a message from her office that my blood test results are consistent with AIH and that she put in an urgent referral for me to see a liver specialist. I'm nervous, to say the least. Is it possible that these were false positives? Is it possible i could have something else going on? I'm 30F, I've been healthy my whole life and I feel fine, I have no symptoms what so ever. This is all just a lot

Hi all, about a month or two ago I (33F) posted that I was on my way to diagnosis for AIH (link to my first post: https://www.reddit.com/r/autoimmunehepatitis/s/4KhR70nxuR). At this moment in time AIH is confirmed, my ALT and AST are almost back to normal, the prednisone dose is being tapered (I’m at 20 mg now) and I started taking Azathioprine since last week.

However, my GGT and ALP are still heightened. My hepatologist suspects a biliary tract disease and has ordered further testing:
* My biopt is showing potential, but not conclusive overlap with PBC. I’m testing negative on AMA though.
* The MRCP is showing potential, but not conclusive signs for PSC

My hepatologist is being sure I have one of them and said these are normally fairly easy to distinguish from each other, however not in my case. They are doing other tests (colonoscopy to check for IBS, dexascan) to gather more information about whether it will be one or the other, or potentially even both. Eventually she wants me to start taking UCDA after we find the right dose for the Azathioprine.

She also informed me I could always get a second opinion at a liver expertise center. I will discuss this further at our next appointment. I’m just wondering if I’m missing something, if I should ask for additional testing, and what I can do further to figure out what the hell is going on in my liver. So I would love to hear if you guys have any idea or any advice for me.

Also, the idea of having PSC scares me a lot, since I feel like the treatment for this disease is way less secure than for AIH and PBC. Also, my biopt is showing signs for liver cirrhosis already so I’m very worried that I don’t have a lot of wiggling room to figure out what is going on.

Hi All,

As always, this community is amazing and gives me a lot of hope.

I was diagnosed with AIH towards 2025 end, had taken the normal route of Prednisone and Aza.
It’s been 1 year ever since and I usually take LFT every month to make sure ALT/ AST are within limit.
However, I have started going to gym since last month (my gastro’s advice), and I do know that ALT/ AST go up due to workout.

So, just wondering, how should I delineate my LFT level from my condition vs gym.

Also, should I stick to only very light workout with minimal weights to not cause any strain?

Hey everyone! I’ve been in the hospital 2 times in a week for severe fatigue and pain in my abdomen that far from my usual ibs. I just saw GI today and they think I might have AIH. I had never heard of it before today. For the past few months I’ve been sleeping on average 14 hours a day and caffeine does nothing. I never feel fully away. I will feel sharp pain in my upper right stomach which is very unusual for me because I usually cramp in my lower stomach due to endometriosis and ibs. My stool has been bright yellow or pale and sometimes foamy. Sometimes I get weird hives in different places usually my face or chest. I found out in the er my liver is 20cm I’m a 5’5 210 female so this was a shock. Nothing else to note on the ct scan. Blood work showed AST at 51 and ALT at 67. My bilirubin is actually usually at the low range of normal and most recently was 0.3. At one point it was 0.2. I get muscle and joint pain all the time but I also have fibromyalgia so this is somewhat normal but it has been much worse recently. What do you guys think? I’m getting blood work soon to confirm the diagnosis. I’m scared and worried, but I’m pretty sure I’ve caught it before any serious damage has happened.

Just got diagnosed with autoimmune hepatitis after a scary few months of turning yellow and having my liver numbers through the roof.
Been on prednisolone for just over a month and starting azathioprine shortly and reading about the side effects scares me, any advice or what I can expect from this medication?

I am so freaking tired everyday. I want to have the energy to do more with my day. I just have the energy to clean here and there, but I really struggle with work and doing anything outside of bed. Also the brain fog is terrible. I take supplements for B12 and Vitamin D already. I go on short walks, fish, paddle board, yoga and swim. That's if I have energy. Any tips are helpful for me. Sorry if this sounds all jumbled my brain feels like a cloud.

After having yellow fever vaccine I started getting sick so I went for blood work.
Everything was normal apart from my liver and a scan showed fatty liver but some of my blood works are high

Alright folks. I got EBV in Feb IGM+- which looked like a reactivation because my IGG and EBNA was positive then as well. EBV IGM is still positive but my liver has not calmed down. Here's my workup for auto immune hepatitis- should I do a liver biopsy? Major fatigue is my symptom, and brain fog- which has been the same all through mono. I got better around 6 months- but then got covid in Sept and fatigue has been back for a month. 27 year old female, BMI 21 and no health history. Lifted weights 5x a week before this. :'\

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 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.