urso ?

[sadie21]

have to add had pbc for about a year heard about urso medication should u be given it when first diagnosed confused thanks sadie x

[Hidden]

Good morning. I was put on urso as soon as I was diagnosed. It certainly helps my blood counts. Maybe check with your consultant or gp.

Lou

[mumofthree]

I was put on URSO when first diagnosed. Like Louf my readings improved greatly within the first 6 months and returned to almost normal within a year.

[may66]

I was also put on ursofalk as soon as I was diagnosed as well, as apparently at this time,its the only medication that slows the progress of PBC

[witchiegirl]

I think the evidence is that Urso improves blood results due to better bile flow, but does not in fact change how the disease ultimately progresses. You could do a quick online search and get some info on it, to help you decide what may be best for you. Then you are best discussing with your caregivers as every case is unique. I've read a few posts from people on here who aren't on Urso for PBC. My impression is that where diagnosis is clearly PBC, then people generally take Urso. For some people - like me! - it's a grey area. I'm not on Urso though i was for a while about a decade ago. I have autoimmune cholangiopathy and am being treated with steroids and immunosuppressants. This time round Urso hasn't been discussed.

[Wendom]

Hi there my consultant said that pbc seems to be changing and that it's probably down to urso its lowering the need for transplants and yet there are more people being diagnosed with pbc .so I don't think lowering your bloods is just what urso does I think it actually must slow it down although maybe not in everyone otherwise your bloods would keep on rising indicating progression at a faster rate I know of people stopping urso and there bloods start to rise so they have to take it again my consultant told me to ignore the two liver nurses who told me I had ten to fifteen years because no one can predict that and that's when he told me about the natural progression of the disease changing these two nurses upset me and whilst I have symptoms of pbc (consultant said I'm symptomatic ) I have positive Ama (10 tests all positive ) also positive igm but I've always had normal liver functions until quite recently Alt slightly increased but consultant thinks it from my slightly fatty liver I'm overweight but he started me on urso he said my liver functions would eventually change soon anyway so considering I'm supposed to have preclinical pbc I don't know why these two specialist consultant nurses said that to me they scared the hell out of me I think you should ask shy your not on urso and try to get on it as soon as possible the daily upper right quadrent pain has pretty much gone since I started urso in January Also I'm sure I'm getting some of my energy back don't think I will ever be normal again but I'm gratefull for anything not sure if you have any Symptoms or what your bloods say but I would ask for it if you have a definite diagnosis as slowing it down as much as possible is what you need to do hope this helps take care x

[witchiegirl]

That's all really interesting, Wendom, esp about change in 'natural progression'. I think i will ask about urso, seeing specialist in a few weeks. My bloods are quite 'off' at present, though steroids helping a bit. Gamma GT over 400, AP up too, though other two - alt and the other ? name - have gone down to almost normal. i don't have straight PBC though, and I'm a bit confused about what i do have as specialist man don't talk much!! I'm thinking of discussing stuff with GP next week as I have various specific questions I haven't managed to find answers for with Dr Google. Ha ha!