u/AnUnwiselyChosenName

Newly diagnosed with AIH (or possible DILI/DI-AIH?)

History: A little over two months ago and 2-3 months after starting a new medication and some herbal antimicrobial supplements, a routine blood panel showed I had elevated liver enzymes for the first time ever (highest a little over 100). I retested six weeks later and my ALT and AST had shot up into the high 700s and 400s, so I had a liver biopsy the following week with results that could be either acute onset AIH or a drug-induced liver injury that mimics AIH.

My hepatologist wanted me to begin a course of steroids immediately, but then did another hepatic panel to establish a baseline before I started taking them and my ALT and AST had dropped by 70% in a little over two weeks after discontinuing the suspected drug, down to under 200 for both. The suspected drug has a terminal half-life of 4-5 weeks, and other than the ALT and AST my only abnormal blood tests were a positive ANA titer (320), so she decided to hold off on beginning steroids and retest in a few weeks.

Anyway, I'm really upset about the diagnosis and probably having to take immunosuppressant medication for the rest of my life, and also not holding out much hope that this is DILI rather than a drug injury triggering or unmasking AIH--it sounds like statistically the odds of the former are very low, and my hepatologist said she's seen exactly one case where suspected AIH turned out to be DILI in her entire career. Obviously I have no way of knowing yet if my liver enzymes will even return all the way to normal levels in a few more weeks without treatment, and even if they do, whether they'll stay that way and what that might mean--and I'm really struggling with that uncertainty more than anything else right now.

To be clear, I think it's much more likely that I actually have AIH--possibly triggered by a drug injury--because I also have autoimmune thyroiditis as well as at least one other autoimmune condition plus an unspecified gut dysbiosis (possibly due to Long COVID?), but it would still be so much easier to know one way or the other. Like, it will still suck no matter what, but then I could at least begin to fully grieve and move forward with seeing how I respond to treatment and meds and trying to accept my new normal, rather than having any hope that I might get incredibly lucky and turn out to be a super rare case of DI-AIH.

I do realize those rare cases probably wouldn't still be hanging around here after they turned out not to have this diagnosis, but I guess I'm also just wondering if anyone else has gone through, or knows someone else who has gone through, a similar scenario, and what ultimately happened? Or any other advice you might have for someone in a situation like the one described here. Thanks in advance!

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u/AnUnwiselyChosenName — 6 days ago