I have suffered with the dreaded itch for 11yrs and have been on urso all this time (apart from first 3 months of my pregnancy 6 yrs ago). I have managed to live with it all this time and using questran light has helped but have never gotten rid of it completely. Then from sep 2011- aug 2012 it became so intolerable was making my life so miserable that my quality of life was horrendous and so I underwent tests to be considered for the transplant list as no drugs were working to help it. I had the first lot of tests done in Royal Victoria Hospital, Belfast and was waiting on the call to go to Kings when I decided I could take no more and after reading somewhere i think on here that someone felt the urso made their itch worse I decided to stop it to see what would happen. Low and behold within about two weeks my itch had well settled and had become more of an irritation than something making my life unbearable. I went to y consultant told him what I had done and he agreed with me that if I felt better off the urso then I should stay off it but still wanted me to go to Kings to have their set of transplant tests as symptoms mainly the itch and fatigue were still fluctuating. I did, and just came back recently where the said as itch settled and tests all looked good I do not thankfully at this point (and hopefully never) have to go on the transplant list. Only thing is I do worry a bit that now being off the urso does this mean the pbc will progress quicker as the urso is supposed to slow down the progression. I hope not as I would really hate ever to have to go back on it and for the itch to come back to the same degree with a vengence.
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