Any tips on starting Azathioprine, etc, etc, blah blah
I had an unknown liver injury in December 2025 and have been on prednisone since.
At the hospital, my AST was 1348 and ALT was 1471. No tests clearly showed autoimmune hepatitis, test after test, all just nothing. I was told that since everything came back negative, they were going to “treat me as if I have autoimmune hepatitis.” and "You will be taking Azathioprine for rest of your life"
That has felt like a moving goalpost.
When I came home and restarted my normal prescriptions, my ALT shot up to 1619. I stopped those meds, and my numbers immediately started going back down. At that point, I was diagnosed with drug-induced liver injury.
The biopsy came back inconclusive: maybe drug injury, maybe autoimmune hepatitis.
I did a 6-week prednisone taper, but it didn’t really work. When I got down to 10 mg, my numbers stalled, and without prednisone they started slowly rising again.
My doctor then immediately put me back on 60 mg prednisone. When the numbers went down, they response was basically, “See? You have autoimmune hepatitis.”
But from my perspective, we had been at ALT 1600 less than 6 weeks earlier. The numbers were never normal. So I’m sitting here wondering: couldn’t my liver still just be damaged and recovering? I just need to be on prednisone longer, we should try a longer tamper?
Conversations with the doctor have felt pretty pointless. It feels less like we are discussing my situation and more like, “We don’t talk through this with patients; we follow procedures.” I guess I understand that to some degree, because my liver was failing and I was close to being flown to a transplant center. But I still feel confused and possibly misdiagnosed.
I have received almost no explanation or info on side effects of this drug, what to watch for, what to avoid, or if food or empty stomach. The prescription just showed up.
From what I’m reading, azathioprine can be tricky. For those who have taken azathioprine for autoimmune hepatitis or liver-related issues:
Do you take it with food? Is there anything I should avoid during the first couple months? What side effects or warning signs should I watch for?
How often were your labs checked when you first started? In reading the lab order, they are going to check every 2 weeks. Which google says each 1 week for first 2 months. Like I said, no information from doctors really. I get to see a nurse pratication in 10 days.