Hello Everyone, I joined this site In April this year and have been reading your posts. Got diagnosed with PBC in April this year, I've been having abnormal LFT's since 2009 and my doctor finally sent me to see a specialist. I had a biopsy in January this year. When I got my results in April the specialist wrote it down for me on a piece of paper and told me to look it up on the internet and for my family to do the same. He said there was no cure and that a follow up appointment would be made. I have all the symptoms of PBC, itch, pain in right side, nausea, dry eyes, dry mouth, weak hands and wrist, muscle pain etc.... I had a follow up last week and I saw a nurse who told me a bit about PBC, and that I would be referred to a dietician, I would also need a endoscopy to check for esophageal varices. and that from now on would be seen every 3 months to monitor my condition. On Friday I visited my own doctor as I have been suffering with the itch and the pain in my side. He was going to prescribe some sleeping tablets to help me sleep but then changed his mind, he also said (after examination) I had costochondritis and that I needed anti inflammatory's but due to him not knowing enough about PBC he didn't want to prescribe those either.
Today I rang the hospital and spoke to the specialists secretary, I told her I had no quality of life and felt like topping myself, she said she would speak to the specialist. The specialist rang me not long after and told me he was going to start me on urso and that he would bring my appointment forward. He also said he would write to my GP and explain a little about PBC and the meds I was able to take, unfortunately due to a backlog in correspondence at the hospital this could take up to 5 weeks.