r/autoimmunehepatitis

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 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.

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.