I was diagnosed with PBC last summer and put on 1500 mg of Urso a day, I also take cholestyramine in the mornings. They could not advise of what stage I am in because the doctor who did my biopsy did not take a big enough sample (Ugh).
Anyway, I get my bloodwork done every three months; my levels at diagnosis were (ALP- 1128; ALT- 49 & AST-92), after taking the urso for a couple of months my levels in Sept were (ALP-640; ALT-65 & AST-50), I was pretty excited and felt pretty good, (I had some tiredness and itch but not too bad) I was working out and eating healthy, doing well. As I was going away for Christmas, I had my bloodwork done before I left, in case my over indulging with different foods affected me, so, my levels in Dec were (ALP-709; ALT-95 & AST-63), so, not better.
My GP didn't call me, so I assumed they were still getting better. (She said she thought liver clinic might call me, sure). I had to go in to see my GP, as since January, I have been so itchy all the time, and it was driving me crazy, I am tired and itchy and let's be honest, bitchy. I am having a hard time getting back into working out like I was and although still eating healthy, some bad foods are finding me, I like to have treats when I don't feel well. I told her how I felt and she tried giving me a prescription for ReVia, (naltrexone) which although a drug for treating alcoholism and drug addiction (of which I am neither, I rarely drank, almost never now that I have been diagnosed and have never taken illegal narcotics), she said one of its side effects is relieving itchiness, I read about this drug and it is not to be taken for people with liver problems, so clearly I am not going to be taking that, I didn't even get it filled. I am not sure what she was thinking and clearly she is not used to dealing with this disease, but it just leaves me itchy and sad. I won't be seeing the liver clinic again until late summer, so I don't know what to do.
Does anyone else feel that their doctor just isn't concerned? I cannot get a new one, it is not an option, there are a shortage of doctors here and waiting lists for any that might come. She has been my doctor for about 25 years and I am relatively comfortable with her.
Thanks for letting me rant. Just feeling out of sorts.