I went off the Urso last year as a last resort as I had had a horrendous year with the itch( much like yr had before was diagnosed) . I had read an article about a new drug being trialed for PBC and it mentioned that quite a few of the participants who had never had ich from their PBC complained of itch whilst on the drug. This drug is very similar in nature to Urso. So it got me thinking that maybe the Urso was making my itch worse as I had noticed a few months prior to this that when my dose of Urso was increased the itch got worse but I stuck with it as the consultant thought the higher dose may help the itch (think he was clutching at straws). Anyway as say was at the end of y tether with the itch my quality of life was appauling so I decided to go off the Urso completely. After being off the Urso for about two weeks, whilst the itch did not disappear completely it did become milder, more tolerable and well controlled just taking the Questran Light which had always been on for the itch.
I informed my consultant of what I had done (I was off it about 4weeks by then) and he said that if I felt better off it than on it, then I should stay off it considering that if the itch stayed at the intolerable levels it was at whilst on the Urso then I was facing possiblly being put on the transplant list for intractible itch.
Sadly though my LFTS have risen quite a bit including my Bilirubin since coming off it and am now considering asking my consultant at my next apt about going back on it even thogh I dont want to but neither do I want to end up needing a tranplant. When I asked about this at my last appointment was told that if I did go back on the Urso might only slow down the progression of the disease by a yr or two at the most. I was so shocked by this and the way the consultant was with me that day I asked by GP to refer me to another consultant so it is him I will be asking at my next apt in Jan. Ironic part is am feeeling fairly well apart from the itch seeems to be a little more in the last wk or so and suffering lot more with constipation. So just would just like to know other peoples experiences who are not on Urso in regards to how their livers (LFTs) are without the medication as if possible, I really dont want to have to go back on it. Any replies would be greatly appreciated. Thanks.