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lulubelle57 avatar

Autoimmune Hepatitis

Autoimmune Diseases | Last Active: 3 days ago | Replies (9)

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Profile picture for hola2u @hola2u

Hi! I'm sorry about your diagnosis! If you're not responsive to the Imuran and Prednisone, you might consider Mycophenolate (Cellcept). I was diagnosed in June of 2021 by a Transplant Hepatologist and treated. with Budesonide and Azathioprine (Imuran). No luck. Remained on AZA and Budesonide was replaced with Prednisone. Still, no luck achieving remission, but my enzymes weren't terribly high (mid to upper 100's) Eventually, I was placed on Tacrolimus, which was terrible for me. I noted a few people on the AIHA group who mentioned Mycophenolate and found a recent-ish AIH study by Hepatologists in Athens, Greece that suggested Mycophenolate as a more successful first line therapy. I wish I'd known earlier, as I finally started it 3.5 years in and it worked immediately. 250mg AM/PM. Finally off steroids after 4 years. I now have major osteoporosis at age 52 though I've been a decades long health nut-weights, yoga, healthy diet. Good luck to you! I hope you achieve chemical remission soon!

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Replies to "Hi! I'm sorry about your diagnosis! If you're not responsive to the Imuran and Prednisone, you..."

@hola2u Thanks for sharing your AIH journey! Like you, after testing in my case, they determined I wasn't metabolizing AZA properly so they switched me to Myfortic, and my enzymes normalized quickly. Fortunately, they switched me about 10 months into AZA treatment.
I'm curious if you have any cirrhosis/fibrosis? Also, other than the osteoporosis, did you notice any other long term effects of being on prednisone for 4 years?
I also recently started on risedronate as a preventative for bone loss. I'm down to 5 mg of prednisone now and hope to be off it completely in the next couple of months if all continues to go well.