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@nononanette

Hello humbug, I was diagnosed with autoimmune hepatitis back in July of 2021. I have been on azathioprine since my diagnosis along with prednisone treatments on and off. My doctor just took me off of the azathioprine last week stating that it is not working. He has prescribed budesinide to replace the prednisone and after 3 weeks off the azathioprine he has prescribed mycophenolate to replace the azathioprine. So I guess my answer to your question would be yes, although it is not clear whether or not it is the medication or the disease that is causing the elevated liver tests. I also have celiac disease and find that disease much easier to understand and take control of. I avoid gluten and all is great. However, I find it extremely difficult to wrap my head around autoimmune hepatitis. I just don’t understand why I’m constantly uncomfortable on both sides of my abdomen not just the right side and other than my basic liver enzyme labs being out of range, there are no indications via lab work that anything is wrong. I had a CT scan with contrast and it was marked as unremarkable. I don’t understand how there is no indication of inflammation when I am so uncomfortable. I had an igg4 test done and it too came back normal. Absolutely mind boggling. If my immune system is attacking my liver who’s to say that it can’t be attacking anything else in my body. Not knowing what the trigger is and how to avoid the discomfort is utterly frustrating. It is also difficult to decipher what symptoms are side effects of the medication I’m on and what symptoms are a result of the disease itself. I also have pain in my muscles and joints. Gripping things with a certain strength feels like I am spraining my hands. I find it difficult to get detailed information from my doctor without feeling like I’m a hypochondriac. I’m hoping this support group site can provide some clarity. If this new treatment plan helps I will surely let you know. Good luck to you!

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Replies to "Hello humbug, I was diagnosed with autoimmune hepatitis back in July of 2021. I have been..."

Hi Nononanette,
I feel exactly like you do in terms of being frustrated in not knowing what my triggers might be for autoimmune hepatitis. As you say, it is difficult to avoid something when you don't know what that something is!
Celiac has been ruled out in my case, however.
Sorry to hear that you have abdominal discomfort; I really hope they are able to figure out exactly where that is coming from. I am completely asymptomatic at this point and always have been, even with a confirmed diagnosis of advanced fibrosis due to autoimmune hepatitis.
My follow up is at the end of March, and given that they upped my Imuran dosage, I suspect at that visit, they should be able to know whether Imuran raised my enzymes which were actually going down rapidly prior to me starting that drug. But, I don't believe my liver specialist would double my dosage of Imuran if he felt that was the cause of the spike. I guess I'll find out in March.
Yes, do share any updates on your medication tweaks!
Wishing you well also, and hope things improve for you!