Thanks, Lucy. I read a bunch of your posts today when I was going through the site. I will definitely get a printed copy of the labs. I've been holding up OK, but just now this minute had a little breakdown. Very first time I've shed tears over this. I'm trying to be brave and pro-active, but it's very depressing and LONELY. My husband just came up and hugged me and said, "it's all right," but he just doesn't know what is going through my mind right now. (Of course the prednisone doesn't help my mental state either!)
I know about the enzyme levels and all that--it's the antibodies I'm interested in. My GI doc said the ALT and AST would fall dramatically if I do indeed have AIH. So, I know what to look for there. I read that if significant amounts of ASMA (that's the F-actin, I think) and ANA (Anti-nuclear antibodies) are in the blood, that the most likely cause is AIH. I'm just interested in what the "significant amounts" are!
The hepatologist I'm seeing at Vanderbilt University Hospital said I don't have all the signs of AIH, but treatment needed to start to prevent further scarring of my liver. So, we are treating AIH even though we aren't really sure.
So you are just maintaining right now? I mean, are you considered to be in remission? How long have you had AIH? Do you know what caused it? I have no autoimmune problems in my family, and have been healthy all my life.