Atypical/Uncertain AIH diagnosis
Has anyone else had an atypical/uncertain AIH diagnosis like this?
I've had mildly elevated AST/ALT on and off since I was a teenager, usually somewhere in the 30s–70s. For years, the cause was never really clear. My bilirubin, ALP and IgG have been normal, and my ANA and SMA have been negative.
I've had a liver biopsy that showed mild inflammation but didn't give a clear-cut, textbook diagnosis of autoimmune hepatitis, and I don't have cirrhosis.
What's made things especially complicated is that my mom had autoimmune hepatitis and passed away from it a couple years ago- so my hepatologist has continued to consider AIH even though my labs haven't ever looked typical- and we have tested for just about everything. Nothing is blaring and answer.
A couple years ago, my LKM and mitochondrial/AMA testing were negative. More recently, my LKM came back borderline (24.2), and my mitochondrial antibody screen came back positive.
My hepatologist ultimately decided to treat me for AIH. I started methylprednisolone this summer, and my liver enzymes responded well. I'm now tapering the steroid and started CellCept (mycophenolate) 500 mg twice a day today as my longer-term treatment.
I'm still trying to make sense of everything because my presentation doesn't look like the classic AIH story I've read about and I HATE the thought of being on immunosuppressants long term when we aren’t 100% I actually have AIH. But I also don’t want my mom’s story to be my own because she didn’t keep up with going to her doctors.
Has anyone else had something similar—years of mildly elevated enzymes, negative autoimmune testing that later became borderline/positive, a biopsy that wasn't definitive, and eventually being treated for AIH?
I'd really love to hear from anyone who has gone through a similar diagnostic journey or has an atypical AIH story. 💛