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?
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.