I was wondering if they tested more specific antibodies...ASMA (anti-smooth muscle), ALK-1 (anti-liver kidney), and less commonly; anti-soluble liver/liver pancreas antigen (anti-SLA/LP) or atypical perinuclear antineutrophil cytoplasmic antibodies (atypical pANCA).
Also, they can check for AMA antibodies that would show up if it's PBC.
So you're sure they said scarring and not fibrosis?
As per steroids, I had all the physical and mental side effects. The only one I didn't have was steroid induced diabetes. So hyperactivity, moon face, leg swelling, hump on upper back (that was awesome!), acne, back-ne, irritability, a little spontaneous rage, emotionality...good times, good times. I was on 40mg for 5 weeks though, then 30 for 4, 20 for 3 (I think) 10, for a couple... I cleaned the garage in the middle of the night and the freezer. Had I known, I would've used that sleeplessness more productively and painted. I was super sick when they diagnosed me so they hit me up hard. As I said, Budesonide has less side effects and my hepatologist said if I ever flare, they'll put me on that. I didn't get sicker than normal. My daughter was 8 at the time so the usual school germ magnet. My mom was diagnosed with lung cancer a couple of months after my diagnosis and I flew home to spend a couple of weeks with her and go to chemo appts and didn't get sick. I like to say my cracked out immune system had a good balance with the meds. It kept fighting off the bad but stopped trying to kill me
I had started immunosuppressants the week after I started the steroids and after about
a few months I actually piggy-backed two immunosuppressants waiting for the azathioprine to kick in (it takes two months and since I was so ill they had originally started me on CellCept).
I wouldn't worry about
an ANA of 1:80...that's barely positive. Have they repeated that? Mine initially were either 1:640 or 1:1280 (I can't remember as I may be mixing them up with my daughter's, I'm pretty sure she had a 640 or maybe hers was a 1:320 and mine was the 640...and yet she hasn't been diagnosed with an autoimmune disease yet so fingers crossed
). I'd ask to have that repeated too.
And wait a min....I know you were tested for a bunch of things...was one of them CMV (cytomegalovirus)? Since you're a teacher, I wouldn't be surprised if you are positive. It causes jaundice...and other things. I contracted it after diagnosis so for me, it caused hemolytic anemia - it only lasted a couple of weeks but it can be nasty in the immunosuppressed.
They said your gallbladder is fine? Wondering if the "likely benign lesion" is anywhere near a bile duct and is restricting flow at all. Ever have pain in your right shoulder blade? Trouble with greasy foods?
Are you seeing a different doctor than the dictator?
That's a lot for now, I'll let you digest a minute
Co-Moderator - Hepatitis
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID