Hi, my name is Linda Villanova and I'm from Uxbridge, Ont. Canada and I'm 55.
Diagnosed with PBC Jun 2015. Came back from vacation in Feb and got shingles then back to back chest infections and fatigue which propelled me to my Dr who did blood work, and more blood work and then off to Gastro guy - and surprise! I am on Urso which reduced counts from 690 to 297 in 3 mths, but when I went back for appt 3 mths later #s were up to 308 (pooh). So now I have bloodwork monthly for 3 mths and then back to Gastro guy - unless it starts to rise - which means a biopsy and possible steroids. Not thrilled about either. I have fatigue but not to the extent I've seen on many posts here. Luckily I can work from home a couple days per week which helps. No itching or jaundice. I have had the Fibro u/s and Gastro guy said there is damage but the liver can regenerate so he's not too bothered. Don't know the number. He also said coffee is good for the liver so to drink 2-3 cups/day - anyone else hear that?
The frustrating part seems to be the lack of info or direction with what I can do to help myself. I do yoga 2x/week, walk the dog etc and am able to pretty much live normally with some bouts of fatigue- I just go to bed early or get cranky
Miss my wine !
So glad to have found this site and people that understand.