I was diagnosed with Autoimmune hepatitis in the beginning of 2024 and by Aug 2024, was started on Azathioprine & Budesonide because I declined Prednisone, I didn't want to gain more weight. After 2 weeks I couldn't stand the pain it was causing me, then they tried me on each medication seperately and a month later same thing happened. Then I was tried on Mercaptopurine and I had the same issue. I suffer from Fibromyalgia and have Hashimoto's and Hypothyroidism. At the moment I am on Cellcept and it seems to be working only issue is it's causing me water retention and have to take Furosemide.

I was also diagnosed autoimmune hepatitis Jan 2024. I'm on Cellcept. From what I've been told Cellcept is one of the better meds without TOO many side effects. I did go through several months of migraines, which did subside, and my hair is thinning. My feet, ankles do swell, and I get bloated, although I think that has to do with the liver, like severe itching (only at night). In spite of side effects, I have to say my blood work has been good so I work through it. The dark urine and jaundice is gone. The pharmacist said a lot of these side effects lessen as your body adjusts to meds. I hope so.

I am now on the no sugar bandwagon. It is hard, but it may help your liver if you ban sugar, if you have not already. Although I disagree with most of what Kennedy says, even a broken clock is right twice a day. Also make sure you keep on top of oral health. I can’t speak to the drugs, but my enzymes are almost back to normal and the only things changed are no sugar and taking care of a bad tooth. Oh - and I had a hip replacement - but that is another story - don’t get a hip replacement for your liver. lol. The bad hip did probably affect overall inflammation though.

I was dx tentatively in July 2021, then confirmed via biopsy in Dec 2021. I was 65. I didn't start treatment until March 2022 with prednisone. After 4 days at 40mg I was suicidal and raging, so was switched to budesonide. Per protocol, azathioprine was added once my numbers dropped and I've remained on 50mg since May 2022. My bloodwork has been spot on perfect since then. Zero side effects that I can attribute to aza except, and this is a big one - it raises your risk for skin cancer and I had my first squamous cell carcinoma just over a year ago. Given I spent my childhood burning on a beach in south Texas, the skin cancer didn't surprise me and is something I most likely would have gotten regardless.

Prior to dx, I had increasing joint pain, intolerance to heat, exhaustion, and slight shortness of breath. None of those things resolved with aza and in Jan 2024, I was dx with Sjogren's and put on hydroxychloroquine. The exhaustion resolved, but nothing else. I recently stopped that med to see if it was actually doing anything.

The plan is to repeat the liver biopsy this fall and, if it's clear, to wean off the aza. The risk is that if I flare and have a recurrence, it's much more difficult to tame and would most likely require prednisone, which I can't tolerate.

Questions for you: How were you dx? Bloodwork alone is not definitive. Neither is a CT or Fibroscan Only a biopsy is the gold standard for AIH. What are your liver numbers like?

Really, just read could be helpful.
Some say carnivore diet but realistically can’t imagine that.
There’s always ice bathing. I give up.

I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and I was put on Prednisone and then weaned off for Azathioprine (100 mg) per day. Liver Enzymes starting rising again and was placed back on a prednisone taper for one month (half way through now). I am wondering if anyone else experienced elevated enzymes with 75 or 100 mg. Also wondering about anyone's experience with just 50 mg of Azathioprine. I was diagnosed with PBC in January 2024. Unable to tolerate Ursodiol and was placed on Ocaliva, then liver numbers skyrocketed. Stopped Ocaliva and now I also have Auto Immune Hepatitis. Appreciate hearing your experience with AIH and Azathioprine. Also interested in hearing from anyone who may be on low dose ongoing prednisone. Thanks.

Do you got any negative side effect from been 7 years on Prednisone

AIH really forces a balance between protecting the liver and managing tough side effects. What helps one person can be unbearable for another. Staying in close contact with your hepatologist and adjusting doses slowly can make a real difference. It's good to hear how others are finding their footing. These shared experiences remind us we're not alone in figuring out what's tolerable and what's truly helping.

I have Autoimmune hep since 2006, been on azathioprine since then. Never had any side effects. I'm currently on 200mg daily. I usually do no have side effects from any drugs. Sorry your going thru that.

Hi. I just got diagnosed with my 5th autoimmune disease and have some questions. I had a liver biopsy 2 1/2 weeks ago after my liver enzymes started rising in February and spiked in March and slowly started coming back down. Still a little high. Ultrasound was normal. MRI/MRCP was normal. Liver biopsy ordered. Results just came back this week as Chronic Autoimmune Hepatitis. F 3/4. I am allergic to Steroids/Corticosteroids. (Causes steroid-induced psychosis). Is there anyone who is familiar with non-steroidal treatment options and their effectiveness? I have a referral that was sent in to a specialized Hepatologist four hours away. Gastroenterologist said it will probably take several months to get in as a new patient to Hepatologist. So, in the meantime, I will be untreated. How could my liver get this much damaged in only a few months? Any information or tips/tricks on non-steroidal treatment appreciated. Thanks in advance.