I had my third clinic visit (to my gastro consultant) today since being diagnosed in June with PBC. (I had three weeks in hospital of tests incl biopsy)
I had jaundice, low iron and malabsorbtion of most vitamins. I am back to normal in most things now. I have been on various supplements from time to time and calcium & iron all the time as well as Urso & Steroids. The jaundice is nearly cleared up, my skin is back to normal colour, my eyes are almost clear. I've had bloods done on average every two weeks since getting out of hospital. The pattern emerging is fascinating. My general blood tests are all fine. My LFTs are mixed. 2 tests show reductions, 2 are still elevated. They are now going to wean me off the steroids down to 15mg tomorrow for 2 weeks then 10mg for 2 weeks and I am going to start on Azathioprine and hopefully that will help bring the inflamation down further - more bloods in two weeks.
Although, the jaundice is quite a scary thing and very serious, I have tended not to have any pain, sickness, digestive problems or the itch and great fatigue that seems to be very debilitating for others, it is really a very strange disease. I am just hoping now that I can tolerate the Azathoprine and that it will make a difference.
I suppose in a lot of ways I am lucky, I stopped smoking nearly 5 years ago and have always had a low fat diet. Other then excluding alcohol, which I don't really mind (at the moment anyway) and all the medication I have not had to make any major lifestyle adjustments just yet. I feel well.