I have now been off the Urso for nearly 8 months but despite feeling better off it than did on it my Liver is not responding so well.

[littlemo]

My LFTS are rising steadily since being off it and slowly but surely all the other symptoms apart from the dreaded itch (though not so sure way things are going that it will not return with vengence soon hope not as was my only reason for going off the Urso!) are starting to return. I was feeling quite fatigued but as also have underactive thyroid felt it was down to this. I had my dose of thyroxine increased to 100mcgs daily and did start to feel better for few weeks but then back to feeling drained again. However I am still managing to hold down my part-time job (18.75hrs/wk) and look after house and kids (now almost 6yrs old and 17yrs old) with a good deal of help and support from my wonderful fiance. I have noticed the joint pains are back also moreso when have been lugging equipment in work or over doing it in the house. So very much have to listen to my body even more so now and rest when I can and when the 6yr old lets me! I asked my consultant about going back on Urso( not that really want to but just for sake of my liver!) and he informed (quite abruptly on that particular day!) that even if I did go back on it it may only slow down the progression of the PBC by a yr or two tops which left me very shocked! I am a bit annoyed about the way the consultant dealt with me on that particular day and due to finding out little things in the past that he should have informed me about am generally unhappy under his care and have asked my GP to refer me back to the Hepatologist I used to be with (was changed to the other one when the first one went off to do further studies into Hepatology). So should be called back to clinic next month so will ask him what I should do to prolong the life of my liver as like most am sure, I do not want to have to have a transplant. Will keep you all posted on how I get on. Hope you all are keeping as well as you can and have had a nice Easter. I certainly enjoyed my time off work and the time spent with the family and for a change in Ireland had wonderful weather so was all good

[Pat_H]

I hope the following is of some consolation to you: At last year's conference at Basingstoke, we were told by (I think his name is) Dr George Yells that research has shown that, if we can take Urso, we are more likely to die with PBC than from it.

[littlemo]

Hi yes I have heard that and indeed quoted it myself a few times. Just have to hang in and hope for the best. Thanks.

[Kaywal]

Hi Littlemo. Did you have side effects from the Urso (I can't understand why your consultant would take you off Urso)?. Only I'm having a bit of a stuggle with Urso myself and would be interested to hear your story. Without wanting to bore you rigid, it boils down to Urso increasing my heart rate, making me 'buzz' like caffeine and keeping me up all night.

[littlemo in reply to Kaywal]

Hi Kawal only seeing your question when trawling through my old posts so sincere apologies for this very late reply! If you click on my icon and then my posts you can read tink its in the 2nd r 3rd post why I went off the Urso. I would not recommend anyone going off medication without discussion with consultants. Bfn take care.