Having my first relapse after being in remission for 3 years :/
Hi community! I'm feeling sad and frustrated and wanted to reach out for support and to hear stories about people coming out of remission (if open to sharing). How did you all get diagnosed again-- the second or third time around? The first time I was diagnosed, it took months. My ALT was 2000 (!!), AST over 1500, and ANA titer was positive. I was in and out of the hospital and in horrid pain. My bilis and other labs were mostly normal so it took a very long time to get a diagnosis. After getting the AIH diagnosis and treatment, I got much better. In fact, I have been in remission for 3 years without any medications... until recently. As of last week, I've been feeling symptomatic. Now, my ANA titer is abnormal, FANA staining is high w/ speckled pattern, and my ALT/AST are in the hundreds. My hepatologist now thinks it could be something other than AIH, which is frustrating because idk what else it could be. Meanwhile, I am not able to get treatment until I am diagnosed and I am feeling so crappy (feels just like it did last time when symptoms started when I was first diagnosed). My hepatologist wants to run more labs again (this will be my 4th time in the last month). Why does this have to take so long? I am impatient but I am also so frustrated.