I am newly diagnosed with PBC. Realize from reading here that I should ask my doctor what stage I am. I started taking a large dose of generic ursodiol about 9 days ago. I've read that most people do not have reactions to the urso but I think I am having them because that's the only thing that has changed for me. I have had raging headaches that do go away with Tylenol, although I take that very sparingly. I also am having a period of intense itching at some point each day. I've read that the itching is a sign of liver issues but I never had it until now that I'm taking an medicine I thought would help, not create the itch. I've read about the drug on line and one article suggested that maybe the negative reactions would gradually disappear as my body got used to it. Has anyone had that experience? I see a lot of postings that mention itching.
Another question - how long do you take the urso? For the rest of your life? Do you take it at the same dosage or lower as your numbers improve? I'm asking you on line because you all have a wealth of knowledge based on your own experiences. I'm not sure how many PBC patients my gastro doctor has. I believe he's taking instructions from the liver specialist that he referred me to. That doctor is impossible to reach. My gastro is easy to contact but I'm not sure of the extent of his experience .