Background: I have AIH and take generic cell cept, 1000mg/twice per day (2,000 mg per day total). My liver enzymes hang around the top of the range pretty consistently, but annual fibroscan showed improvement so that’s good.
My question is, at what level does your Hep typically add a new medication? This conversation comes up each visit as I’m right on the edge of normal range (sometimes slightly above), but liver improvement also makes it a tough decision to add more medicine and side effects to the mix.
Just curious what everyone’s cutoff levels are.

I’ve been having issues with fatigue and other things since April, gp did blood test and my atl levels were 543 and ast 302 . Got referred to hepatology. My first letter from May stated I needed a biopsy but after calling the hospital today they still haven’t got me a biopsy appointment. Is this all normal to keep being pushed back?

I was diagnosed with AIH in September. I had my CT scan today and everything looked good...except my liver. Here is what it said:

Liver: There is an area of enhancement on the border of the medial segment of the left

lobe and anterior segment of the right lobe inferiorly in liver segment five measuring 2.5

x 2 cm with rapid washout. Although this could represent a transient hepatic attenuation

difference (THAD), lesions such as adenocarcinoma cannot be excluded. With a history

of chronic hepatitis, this lesion is concerning and is worrisome for a LI-RADS type 5

lesion.

I just had an abdominal scan (ultrasound) in June and it showed none of this. Has anyone had this in their CT scan? Did they follow up with a biopsy? My primary seems to think it is THAD listed above.

Patient information

• Age/sex: 81-year-old female, 81F
• Height: Approximately 5’1”
• Weight: Approximately 88 lbs
• Location: Yunnan, China
• Smoking status: Never smoked
• Alcohol use: None
• Recreational drug use: None
• Current medications: Methylprednisolone, approximately 20 mg daily during fever episodes
• Known medical problems: Recurrent unexplained fevers, suspected but unconfirmed autoimmune hepatitis, osteoporosis, erosive gastritis, peptic ulcers, and a recent severe gastrointestinal bleed
• Duration of main complaint: Recurrent fevers for more than 17 years, beginning in 2008

I am posting on behalf of my 81-year-old grandmother. She has experienced recurring episodes of very high fever since 2008, but despite repeated hospitalizations and extensive testing, doctors have never identified the underlying cause.

The unusual part is that her fever consistently responds very quickly to methylprednisolone. Unfortunately, her long-term steroid exposure has now caused serious complications, including osteoporosis and a life-threatening bleeding peptic ulcer.

Initial illness in 2008

In 2008, she suddenly began developing high fevers almost every afternoon, sometimes reaching 40°C or 104°F. She was hospitalized for more than 40 days and underwent extensive testing, but no clear infection or other cause was identified.

A doctor eventually started her on methylprednisolone, approximately 20 mg daily. Her fever quickly resolved, and she was discharged.

Since then, whenever the fever has returned, methylprednisolone has repeatedly controlled it. Because the medication worked so reliably, it became the main treatment used during each recurrence.

Long-term complications

Over the years, prolonged steroid use has contributed to:

• Severe calcium and bone loss
• Osteoporosis and thinning or compression of the spine
• Erosive gastritis
• Peptic ulcers

Doctors have also suspected autoimmune hepatitis, but as far as our family understands, this diagnosis has never been definitively confirmed.

Recent events in 2026

In mid-April 2026, she developed another sudden high fever while traveling. The fever again resolved after taking methylprednisolone.

On June 2, 2026, she suddenly developed severe rectal bleeding and hematemesis, meaning she was vomiting blood. She was hospitalized urgently. Doctors initially suspected variceal bleeding related to liver cirrhosis, but during treatment or surgery, they determined that the bleeding was caused by a peptic ulcer instead. The bleeding was successfully controlled.

In mid-June, her fever returned again. She underwent approximately 10 days of extensive testing at a hospital in Dali, Yunnan, China. According to our family, bacterial and viral infections were ruled out, but doctors still could not identify the cause of the fever.

She was then given intravenous methylprednisolone at approximately 20 mg daily, and once again, the fever improved almost immediately.

Our questions

1. What conditions can cause recurrent high fevers for many years while repeatedly responding to corticosteroids?
2. Are there autoimmune, inflammatory, hematologic, liver-related, or autoinflammatory conditions that might explain both the fever pattern and her possible liver abnormalities?
3. What additional tests or specialist evaluations would be reasonable to discuss with her doctors?
4. Could methylprednisolone be temporarily suppressing an undiagnosed infection, cancer, or inflammatory condition rather than treating the underlying cause?
5. How can doctors reduce the risks of further gastrointestinal bleeding and osteoporosis if she continues to require steroids?
6. Should her doctors consider a steroid-sparing medication, and what type of specialist would be most appropriate to evaluate that possibility?

We understand that no one online can diagnose her, especially without reviewing her records. We are mainly hoping for possible conditions, tests, or specialties that we can ask her medical team about.

Thank you very much for reading. Any medically informed suggestions or experiences with a similar fever pattern would mean a great deal to our family!!!

I ended up having an acute onset of symptoms and disease three years ago. It occurred during my first year as a teacher.

I’ve noticed a lot of teachers with Autoimmune Hepatitis. I wonder if there is some correlation to the job and this disease.

Hello
I’m sorry if it the wrong subreddit, i’ve posted in a few in order to get opinions.

Female, 33 years old, non smoker, normal-low BMI.

Back in december (7 months ago) i stopped taking my contraceptive pill after being on one for 17 years.
My body really really didn’t not cope well with the change of hormones. For 3 months i went through a lot of symptoms, issues etc.
One of the main issue was elevated ALT enzymes from January until March (2 months of elevated results).
Due to this i was sent to a gastroenterologist to conduct more tests. I had several other blood tests including liver antibodies, liver fibroscan, ultrasound, some autoimmune blood tests and everything came back normal.
The specialist agreed that it could be due to stopping birth control and all the hormonal changes but did suggest more tests.
I had also mentioned that i was taking paracetamol most days at the time (for other reasons) and he said that would not help the issue and suggested i stopped.

I have had nothing done or check since mid March regarding this until last week (mid july). 4 months after my last tests I had an appointment with a new specialist as my previous one is now on long term sickness.

I am now 11 weeks pregnant (reason why i stopped contraception in the first place).
The new specialist completely brushed off the idea that it could be due to stopping birth control. Decided that i most definitely have an autoimmune liver disease, despite everything coming back normal aside from the elevated ALT 4 months previous.
He is now redoing every test that have been done for the past 7 months, since January.

My liver enzymes have now come completely normal and in range as i expected. I am still waiting for my new liver antobody panel (that came back normal 7 months ago). But he is insisting about more autoimmune tests. And he now even mentioned a liver biopsy despite the risks to the pregnancy.

He described the pregnancy as an inconvenience for a diagnosis and even said, i quote “i may not even still be pregnant in 2 months cause it’s only first trimester now”.

Could this doctor be wrong and the first doctor be right that it was all due to stopping birth control?
Now that my enzymes are back in range as expected, and every other test has always been normal, could it have just been a flux for 2 months and i don’t actually have an autoimmune liver disease?

All this going around in circle since January, the no answer and the back and forth is really really causing me anxiety. And now being pregnant i am really struggling with the worry for me and the baby.
I thought i was over it all with everything back to normal and the new added stress for a first pregnancy is pretty awful.

This post is informational but also venting.

Well, I was diagnosed with AIH in January and in February my doctor started with the treatment: prednisone then aza. I joined this community in February and got to know a lot about side effects and tests I was suppose to do. One of them was the TMPT test, that checks if azathioprine is not toxic for your body. Well I talked to my doctor about it because in one month taking aza I had several side effects: nausea, exhaustion, depression, etc. My doctor explained that in one month taking 50mg of aza if it was toxic for me we would’ve known already - I’d be in the hospital. Anyway, he gave me a bunch of meds so I could deal with side effects, I stopped taking aza in the morning and started taking it in the afternoon and it did get better. Then he increased aza to 75mg and now one month from it here I am in ICU, my blood count is completely altered and I’m undergoing several blood transfusions. And more importantly I’m pissed at my doctor that is now explaining to me something I already know: azathiprione can be toxic for very few people. Well if I had insisted for him to do TMPT test maybe I wouldn’t be in another nightmare in the ICU. So insist to your doctors, your knowledge matters, always!!

For those who had this problem with aza as well, which med do you take now? What side effects there are? For how long do you take them now?

Hi all, what do you think are misconceptions about living with AIH? We all have heard and experienced cons and live in a bubble of fear in our daily life. But what do you think are some fears which are just in our mind and AIH will not affect us on that level.

People with years and decades of experience can help us understand and learn :)

I’m currently in the hospital for acute hepatitis, all tests have been negative except for these. seeing a GI in the morning and they told me to prepare for liver biopsy if GI says so. anyone else have similar symptoms or found out it wasn’t auto immune hepatitis I’m 25, I drink but not heavy last drinks were during July 4th weekend which I mean wasn’t that long ago but don’t know if that’s enough to make my levels this high. I’m just very scared and don’t know what to think of everything, I went to the ER thinking I was dehydrated but this is what they found

Hi everyone, I'm currently in the diagnostic process and learning about autoimmune hepatitis (AIH). I have a background of lupus-related markers (positive anti-Smith and anti-dsDNA) but haven't received an official lupus diagnosis yet.

My recent liver function tests came back elevated:

Total Bilirubin: 22 (<17)

Alkaline Phosphatase (ALP): 167 (35-120)

Gamma GT: Normal

Alanine Aminotransferase (ALT): 51 (<36)

An abdominal ultrasound came back normal. Given these results, my doctor checked my smooth muscle antibody (SMA) titer, which came back at 1:320.

Does this combination strongly point toward AIH, or could it be lupus-related liver involvement? Any advice on what to ask my doctor next would be greatly appreciated!

Hello,

I would really appreciate hearing from parents or anyone who has gone through a similar experience.

My daughter, Inas, is 10 years old and has autoimmune liver disease. She initially started on 35 mg of prednisone and is now down to 15 mg. She is also taking azathioprine, and her doctors have told us that she will likely need to stay on this medication for life.

Because she is immunosuppressed, she was recently hospitalized for 10 days due to a viral infection.

I have so many questions about her future. Will she be able to live a normal life? Play, go to school, participate in activities, work when she's older, get married, and have a life like everyone else?

Will she always be more prone to getting sick because of her condition and medications? Will she always need to wear a mask in public?

Thank you so much to anyone willing to share their experience or advice.

Hi everyone,
I’m looking for some insight while I wait for my gastroenterology follow-up.

I have hidradenitis suppurativa (HS) and have previously taken rifampicin + clindamycin for 3-month courses. Rifampicin can affect the liver, so I’ve had routine liver blood tests over the years. My last course was about a year ago.

In January, as I wanted to start a new medication, my dermatologist checked my liver enzymes:

ALT ~75
I had the flu at the time.
Repeat blood test 12 days later: ALT 99.
All other liver tests were normal.

I was referred to gastroenterology. An abdominal ultrasound was completely normal.

I then left the country for a few months. During that time I drank more alcohol than usual because I was on vacation. When I returned in June, my ALT was 75 again, with all other liver tests still normal.

Two weeks ago my latest results were:
ALT 86
AST 40 (lab upper limit 35)
ALP 116 (normal)
Bilirubin normal
IgG normal
ANA and AMA negative
SMA and F-actin (actin) antibodies positive (no titer yet)

I also had a FibroScan, which showed no fibrosis or scarring and only minimal fatty liver. Hepatitis A, B and C were negative. I also have EBV antibodies from a past infection.

Over the last couple of months I’ve lost around 10 kg, reached a normal BMI, and was weight training 4x/week while taking creatine and pre-workout.

Since finding out about the positive antibodies I’ve been pretty anxious and have fallen off my routine, but I’m planning to get back to it.

Has anyone had a similar combination of mildly elevated ALT, positive SMA/F-actin antibodies, but normal IgG and a normal FibroScan?

Did it end up being autoimmune hepatitis, drug-induced liver injury, or something else?

Any experiences or insights would be greatly appreciated. Thanks!

hi!

i had a biopsy today (ultrasound guided) and they put me on fentanyl and stuff so i was awake and it definitely hurt but i was too sleepy to care. everything went fine! but when i was put to recover for 4 hours a few red flags happened :

1) the doctor told me I couldn’t eat for 2-3 hours, but the nurse brought me food after 5 minutes (I told him I was hungry) I won’t lie, I ate. I was so hungry lol but this shows me that there was no communication/the nurse didn’t know what to do
2) I wasn’t told to lay on my side. The nurse asked the porter if I should be laying on my side as usual and the porter shrugged and said the doctor didn’t mention anything about that so the nurse told me that even though that’s usually what’s recommended, if the doctor didn’t say anything to just lay down however. I laid down flat, on my side, I was moving around, sitting up, walking around. I felt fine and the nurse saw me doing this and said it was fine. I was just physically uncomfortable and in pain so I kept moving. My rib area was hurting BAD.
3) no one checked up on me at all. I asked the nurse if anyone was going to check on me like the doctor and he said no. When I had a biopsy 10 years ago my liver had a small bleed in it and I remember they found out because they did a CT scan before discharging me. No one monitored me. Someone took my blood pressure right before I left but that’s about it. The nurse looked at the bandaid on my incision just with her eyeballs for 1 second, didn’t remove the bandaid or press around it or anything. No one asked about my pain and kinda dismissed me when I said I was in a lot of pain. No follow up from the doctor or anyone. I was just told I can go since my BP is normal and I’m not in pain (even though I said over and over I was) and to watch for signs of infection like bruising.

Anyway, when I finally got home I ate a meal I shouldn’t have. I ate chicken parm with pasta and cheese and bread. Immediately got heartburn. Took 3 doses of pepto without realizing it’s similar to aspirin and I’m not supposed to take it cause it increases the risk of internal bleeding. I was panicking

Tried to call the hospital but no one can help me bc the doctor isn’t responding and the care team left 4 hours ago for the day

So now I’m home in so much pain, walking hurts, breathing deep hurts, laughing and hiccuping hurts.. and my stomach hurts.
Is it the worst pain Ive ever had in my life? No. But it’s really excruciating. I’d say it’s a 7.5/10. It especially hurts when I’m laying down and I have to get up

I really don’t want to go back to the ER cause the bandage looks fine and there’s no bruising, I’m not sweating etc. do people just sometimes have this much pain after liver biopsy? It didn’t hurt the first time I did it

Thank you

Has anyone else experienced a slight uptick in liver enzymes when decreasing prednisone to 5mg or lower doses in general? If so did it stabilize and continue dropping after awhile or did you have to switch or remain on anything for longer than anticipated?

Hi, I have had high ast and alt for 5 years (or at least I know since 5 years ago) they were elevated slightly, on average around 80 ast and 180-200 alt jumping up and down a little. I went through 4 doctors, none of them knew what was going on with my liver and were giving me standard treatment that… didn’t actually had an effect. I have never had any symptoms, ultrasound was always clean. 7 months ago though, ast and alt jumped to 350 and 764 and I went to the best gastroenterologist in my country. NMR showed no problems, but biopsy found I had a little fibrosis in beginning stages. The cause of it being autoimmune hepatitis was possible. The doctor gave me another standard treatment pills and they also failed at the end to cure me. Now, one month ago he said that this shouldn’t happen and told me to take prednisone since it can’t be anything else but autoimmune hepatitis. At that time my ast and alt were 124 and 512 respectively. In one week of 30mg prednisone and another with 25mg per day they shank down to 31 ast and 118 alt, which was a miracle! The doctor said that this treatment works on me exactly as it should! Since then I take prednisone reducing it with 5mg per week and I take 50mg Imuran (azathioprine) per day. However, after almost two weeks ast and alt have again elevated to 48 ast and 144 alt.
I am very worried because I have no idea if they actually help or not, or if they help but since I am reducing the prednisone pills this is to be expected? (And the doctor said that Imuran’s effect would actually start in three months or so.)
How does this treatment work?

Hi,

I’ve been taking pred and aza for some time now (4 months) and have been experiencing some side effects - and I’m dealing with them with more meds 🤡 However, it’s been a week that I’ve been experiencing very strong headaches. It can be related to other health issues I have such as bruxism, but I just want to confirm if maybe someone else experienced headaches as side effects of prednisone or aza.

Female 31 80kg

Vitamin D deficiency of 20 led to liver panel which shown elevated alt of 79.

3 months on vitamin d then liver function advanced panel taken

Results are smooth muscle antibody positive 1:200

Also had a positive 1:80 in 2018 no known cause found at that time.

GGT 259

Enzymes returned back to normal on this test. On previous tests they go up and down.

Have had a mild liver ache which i put down to gallbladder removal 5 years ago. When taking paracetamol or naproxen for other health conditions I get liver pain. Similar to milder version of a gallbladder attack.

Reduced pain relief to one dose a day and have done this for two years.

Had a referal to hepatology. Still waiting.

History of autoimmune type issues recurrent infections rashes etc. Immunology could not find a cause back in 2020.

Could someone please shed some light on to what may be happening and whats to come. I know autoimmune hepatitis is in question with a high smooth muscle like this.

Is it possibly lupus or a wider systemic auto immune issue or likely to be auto hepatitis due to smooth muscle positive and ANA negative.

Thanks

I’ve had AIH since November high Bilirubin up to 540 (now down to 33) and ALT high as 3330 down to 130 now back up to over 500. My bloods continue to be volatile and I’m living in misery with chronic diarrhoea. I’m wondering if anyone else is on a similar dosage as me?
I was put on steroids (Prednisolone) started at 30mg now down to 10mg a day but they don’t seem to be having any effect. I’m wondering if that dose is too low should I ask my doctor to increase or not bother?
They have discussed me taking a powerful immune suppressant called RITUXIMAB it’s very expensive and apparently I would need to sign a consent form due to some risks attached to it. The doctor said it would put my AIH liver disease into full remission but I am concerned. Again has anyone taken this medication?
Thanks for reading

Hey! Recently I went in for routine blood work and got that my ALT was 102 and AST was 63, everything else was fine including other liver indicators. After getting retested five days later, both liver enzymes dropped No diabetes or significant cholesterol. I’m 20F and otherwise healthy with no family history of liver issues or autoimmune. I‘ve been taking ibuprofen a little more than often in the past month or two due to getting sick and wisdom teeth. Also took amoxicillin and dexamethasone for wisdom teeth a month ago, and taking zyrtec, vitamin b, zinc, and vitamin c supplements. My PCP does not think it has to do with these medications. They brought up it possibly being autoimmune hepititis due to my age and gender. Now I’m just waiting for the autoimmune tests which still haven’t come out yet despite the others already being out and normal, so I‘m very anxious. I guess for more certainty I was wondering if anyone has been in a similar situation and is willing to share their experiences?

Update: all tests returned normal including anti smooth muscle and anti mitochondria!

I’ve dealt with severe fatigue my entire life. It’s likely never getting better.

I feel like I’m not actually living—just existing in a body that feels like concrete. I have zero energy to do anything, and I’m in a really dark place wondering what the point of keeping going is.

To anyone else with permanent fatigue: How do you find a reason to keep going when your battery is always at zero.

Hello everyone !

English is not my main language so please excuse my bad wording sometimes.

I (F24) am currently suspected to have AIH (and only that) and waiting for my liver biopsy (expected on July 9), and I never drink, smoke or take drugs (but I've been 4 years total on different birth control pills for PCOS but don’t take any since 1y or so), no diabetes nor pre-diabetes and I am currently overweight but tried my best to eat healthy (less sugar/greasy food and no soda anymore) since January and was advised to follow a cirrhosis patient diet around May (and lost about 5kg since)

My liver enzymes are between for AST 130-170, ALT 260-320 and GGT 60-90 but no sign of hepatic insufficiency yet, peak during June

I am positive to anti-smooth muscle antibody at 1/160 but they are not anti-actine specific, have a little deficit in alpha 1 antitrypsin, am positive for ANA (AC-4/5/31) at 1/80 and suspected to have some Anti-M2-3E

My liver as NASH for sure and is starting to turn fibrotic (currently 12kPa on the fibroscan) and seems to be worsening even after the big change in my diet and loosing weight

All this was discovered in April after a blood test and a visit to the emergency after severe abdominal pain, but I started feeling sick since February but kind of brush it off on other causes like PCOS, Stress and stuff. I am always exhausted to the point of needing to sleep 17 hours or so, feeling weak and always feel low in battery even after sleeping. I feel severe pain on my liver side after almost every meal, kind of the same I was experiencing before they removed my gallbladder due to gallstones (at 12yo) and needle like pain around the spleen (both are a little too big on the scanner too)

I know it is kind of childish to ask strangers on the internet and I know you don’t have the answers either but I'm feeling completely lost, and asking some of you that had experienced this or something similar may ease me a little. I've always been easily ill since childhood but this is so much more...

So what should I expect from the biopsy ? Should I prepare myself mentally now to everything that comes after if the diagnosis is confirmed ? Or try not to think so much ? What did you do/would do if you were in my shoes ?

Thank you for taking the time to read this