r/autoimmunehepatitis

Smooth muscle positive 1:200 GGT 259

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

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u/Professional-Sky8536 — 4 days ago

Is anyone on a AIH dose of Tacrilimus 1mg x 2 plus Mycophenolate 500mg x 2 a day?

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

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u/redingreenout — 5 days ago
▲ 1 r/autoimmunehepatitis+1 crossposts

Anxiety around diagnosis

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!

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u/Ecstatic-Willow5522 — 5 days ago

Life worth living with autoimmun disease?

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.

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u/Own_Gas_6378 — 7 days ago

I am thinking of what should I expect now

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

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u/Lopsided-Water-2328 — 6 days ago

Update on AIH Pregnancy MFM Visit / Experience

For the original, see here: https://www.reddit.com/r/autoimmunehepatitis/s/qq9FsCAqcp

We got with her Hepatologist and informed him of the situation and what we were told, and he was baffled at the entire ordeal. He had no idea why the MFM would act like those levels are uncannily high (which they are typically baseline for my wife) and that he is going to get in contact with the lead Hepatologist there within the unit that also specializes in pregnancy for AIH patients. Not an MFM or OBGYN, but she knows all of the MFMs in the unit. He stated that she told him that she is going to speak with the MFM that we had, he is putting in that we do not see her ever again, and that someone needs to speak with her regarding the incident and try to understand where she was coming from.

He noted that he has heard that our MFM is nervous when it comes to liver diseases and gets anxious speaking to those types of patients, and that she most likely was not coming from a bad place and was being direct about everything that could happen. Having said that, he said he is pretty pissed about the incident and doesn't understand what she could know that they don't know, and that the Hepatologist that he is putting us in contact with already has known about my wife a few months prior (he brought her up to her) and that she stated it is the perfect time for her to get pregnant and she sees no issues. The levels are elevated but not alarmingly so there was no need to speak on termination by any means, and he said they will get her through this pregnancy.

To avoid preeclampsia and the other conditions, they typically start baby aspirin to curb this in the beginning and will just watch her levels. So all of these doom and gloom situations literally appear to be solved by baby aspirin and increased dosages of prednisone, which as worked 100% of the time with my wife's levels. She is only on 7.5mg of prednisone and takes tacro.

I still can't wrap my head around the situation and why we were talking termination, and these simple solutions we were already aware of but were presented like we were looking at a hard road. My wife is 28, has had AIH for 8 years roughly, and has been able to stabilize her levels for the most part. She isn't overweight, she works out, eat healthy, and maintains an active lifestyle. I felt like we were just being read a textbook as opposed to looking at an individual case.

So Thursday we walked out thinking we were looking at extremely difficult and tough decisions, and ended Friday with basically being told the whole thing was a sham and not accurate at all. Wasted energy and worry for essentially no reason.

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u/Cute_Score_7900 — 9 days ago
▲ 0 r/autoimmunehepatitis+1 crossposts

Hepatitis b diagnosis help

Im a young 23 year old male and i just got blood work which i decipher to mean that i have hepatitis b despite being vaccinated as a baby. Im quite scared, and honestly feel really shitty about myself. I think it might be chronic because its been a while since I’ve slept with someone who isnt my current partner and the way the results look it seems ive had it for a while. Am i ask fucked as i think i am? Its just a really sucky feeling, any advice or support would be greatly appreciated.

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u/Working_Fun_803 — 10 days ago

Wife is 11 Weeks Pregnant with AIH

Today my wife and I went to our second ultrasound appointment and the way they went about delivering the news of the risk was terrible and frightening to say the least. For context, my wife does have AIH in a form that seems "uncontrolled" as she has higher numbers than most, but overall she has been living with it for 7 years and we got pregnant on our first try. She got her labs done twice since being pregnant, with first blood reading being pretty high but then second coming down. The OBGYN was going strictly off of her last reading which was trending down but still high, and delivered the following news to us:

- My wife is higher risk than most, and material death statistics point at 11% or something of that nature if it went sideways

- liver transplant if things trended incorrectly

- asking us if we were there to terminate the pregnancy today due to the situation

- if things continue to trend in the wrong direction we will have to terminate the pregnancy

- that her levels aren't controlled in comparison to others

A lot of this we knew, but after the conversation and feeling like we were potentially facing an abortion, they didn't include any information on second and third trimester and how levels typically reduce and improve. There was nothing positive, it was all overwhelmingly negative. They did her labs immediately after the conversation and we got home and we saw that everything went down, almost to normal levels.

4 weeks ago:

ALT: 170

AST: 71

Bilirubin: normal

Protein: 8.5

Today:

ALT: 140

AST 47

Bilirubin: normal

Protein: 8.6

I don't know how to feel about the situation and if she went about it incorrectly or what, but I feel we should have had the bloodwork done prior to the conversation instead of going off of older data points and jumping into potentially losing our baby. I also have not read anywhere with these other stories it was as dire as they were acting here? She is on 7.5mg of prednisone and takes Tacro, that is all she is on + prenatals.

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u/Cute_Score_7900 — 11 days ago
▲ 23 r/autoimmunehepatitis+1 crossposts

I have autoimmune hepatitis

I was exposed to hepatitis A back in February this year due to an outbreak from my child daycare. My GI specialist informed me the exposure triggered an autoimmune disease called autoimmune hepatitis. It has been hard to lose weight, I’ve been fasting, drinking 3-4 L of water, limiting fats almost completely. Meal wise I don’t know what I should be eating. Any recommendations?

u/Beneficial_Rope_2530 — 11 days ago

Positive smooth muscle antibody (1:80) after hepatitis A, but normal liver enzymes and negative ANA — how concerned should I be?

Hi everyone,

I’m trying to make sense of some lab results and I’m having trouble getting clear follow-up from my doctor, so I wanted to ask here for perspective.

Background:

  • I had Hepatitis B last year (unclear if resolved vs chronic — currently trying to confirm full status)
  • I had Hepatitis A this year and recovered
  • About ~2 months after Hep A recovery, I had repeat labs and an ultrasound

June labs (2 months post Hep A):

  • AST: 19 (normal)
  • ALT: 23 (normal)
  • ANA screen: Negative
  • Smooth muscle antibody (ASMA/SMA): Positive
  • SMA titer: 1:80
  • Ferritin: 52 (range 38–380)
  • Liver ultrasound: normal (no abnormalities reported)

Symptoms:

I currently feel recovered and do not have ongoing symptoms like jaundice, fatigue, or RUQ pain.

My concern:

The only abnormal finding is a positive smooth muscle antibody at 1:80, but my liver enzymes are normal and ANA is negative.

I’ve read this can sometimes be associated with autoimmune hepatitis, but I also understand it can appear after infections or be nonspecific.

Given the context of:

  • recent Hep A infection
  • prior Hep B history
  • otherwise normal liver tests and imaging

I’m trying to understand:

  • How significant is an isolated SMA 1:80 with normal ALT/AST?
  • Is this something that commonly resolves after viral hepatitis?
  • What additional tests would typically be done next (IgG, repeat labs, etc.)?
  • At what point is autoimmune hepatitis actually suspected vs monitored?

I’m not looking for a diagnosis, just trying to understand how hepatologists usually interpret this pattern and what follow-up is considered standard.

Thanks in advance to anyone who can share experience or medical insight.

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u/Rare_Deal — 13 days ago
▲ 3 r/autoimmunehepatitis+1 crossposts

UC, PSC and AIH diagnosis

So about 2 years ago I M22 was diagnosed with UC. A couple of months later I had issues with my liver. To which I was later diagnosed with Autoimmune Hepatitis and PSC.
It completely changed my life. I was super active and outgoing but since I can barely do anything without feeling exhausted. I can’t even study or work as I cant do anything for too long. However I do think part of that is due to mentally feeling done with life.

I have been on many drugs for my UC from biologics and JAK inhibitors and even a clinical trial. None have worked at this point. I am currently 3 weeks into taking Rinvoq but it does not seem to be working. On the other hand my liver seems to be ok. It is stable for the time being.
At this point it is likely that surgery is the next option.
I’m quite concerned about what the rest of my life looks like. I don’t know how to feel about everything. If anyone has some ideas or advice I would love to hear anything.
Thank you in advance

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u/Dazzling-Bicycle-717 — 12 days ago