I am writing from Canada and after a year of testing, been diagnosed with PBC. The specialist here knows very little about the disease and has told me there is no known cause or cure. I began taking Urso seven months ago, along with some pills to help me sleep without itching and some more to do something with the bile. I found I was sleeping about 20 hours a day and felt fatigued all the time. I could not get an answer from him as to what stage I was at. When I asked my family doctor, he read the report and the specialist didn't say for sure it was PBC. He sent me to another doctor who has started me on 50,000 units of Vitamin D a week.
To make a long story short, I have stopped taking all this medication and stopped going for weekly blood work. I cannot take all the tests and probing they are doing on me. I ended up with no sense of taste and sleeping. While I was tired before the medication, at least I had a quality of life.
Now I am not sure what to do or what will happen. I read this website all the time and it has helped a great deal. I cannot find a doctor that specializes in PBC here. I live in Hamilton, Ontario.
If any of you have a recommendation, I would be very much appreciate it.