Autoimmune hepatitis: Questions about treatment and transplant

Diagnosed with autoimmune hepatitis .
Already have PMR , GCA, and Graves’ disease.
Taking a pass on treatment. The drugs sound worse than the condition and I am 71 years old. I believe 5-10 good years better than 10-20 poor, sickly years. Any try AZA without side effects. Already taken prednisone for 7 years and finally down to one mg. Staying there.

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.

Diagnosed with autoimmune hepatitis .
Already have PMR , GCA, and Graves’ disease.
Taking a pass on treatment. The drugs sound worse than the condition and I am 71 years old. I believe 5-10 good years better than 10-20 poor, sickly years. Any try AZA without side effects. Already taken prednisone for 7 years and finally down to one mg. Staying there.

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.

Diagnosed with autoimmune hepatitis .
Already have PMR , GCA, and Graves’ disease.
Taking a pass on treatment. The drugs sound worse than the condition and I am 71 years old. I believe 5-10 good years better than 10-20 poor, sickly years. Any try AZA without side effects. Already taken prednisone for 7 years and finally down to one mg. Staying there.

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?

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.

Thanks, I’ll try the sugar bandwagon too. Better than the meds. Also turmeric could be helpful.

Thanks for the info. I was diagnosed with a liver biopsy. Already have 3 autoimmune conditions. Taken pred for 7 years. Highest dose was 30 mg. Been on just 1mg past 2 years. Can’t go that route again and gave already had skin cancer. Seems the cure is worse than the condition in some cases.

So AZA was causing you pain or budesonide? What kind of pain?