Just diagnosed with pbc stage 4, experiences

[Suzie38]

Hello,

I'm recently diagnosed with liver cirrhosis due to pbc. My dr has precribed me urso. Are there others who are diagnosed with pbc in such an advanced stage? En how long did you remain complication free? And did the urso work for you? A lot of questions I know, but i'm very worried after reading about the average life expectancy with this stage of bpc and about the fact that urso doesn't seem to work very well in the advanced stages .

[Hayls48]

Hi Suzie,

I had pbc which was not diagnosed until it was well advanced. I too was prescribed urso which unfortunately did not work for me at all. The worst symptom I had was the itching which drove me scatty and unable to sleep etc. I tried various drugs to try and control the itching with no success until I was prescribed rifampicin, that worked a treat. Unfortunately as my pbc was very aggressive and was not picked up early, my journey resulted in transplant. I am pbc free now and long may it continue, and 2 and a bit years post transplant. I was 43 when diagnosed and received a transplant at 45. Everybody is different and the disease is unpleasant to say the least, don’t worry I’m sure you’ll get great care. If you have any questions feel free to ask. There are lots of very helpful people on here who I’m sure will set you at ease. I’m willing to answer any questions you may have about how pbc effected me. Wishing you well

Hayls

[4pjx__]

I was diagnosed last May. Stage 3, severe fibrosis. After 2 weeks on Urso my lft numbers were cut in half. Last August AST and ALT went to the normal range. That was the first time since February. My ALP and billirubin are still high. ALP around 225 and billirubin 1.8. The hepatologist said I have stablized and don't have to go back until Feb. Imdo have to have scans every 6 months. I think I might have been teetering on the edge of going in to stage 4. I feel like Urso is working for me. I do get tired if I go too hard but I do not have the itch and I feel thankful for that every day. I try to stay positive and not worry about my condition too much.

Best wishes,

Pam

[GrittyReads]

There is a website here on 'Health Unlocked' that is specifically for those with PBC. 'It is called 'PBC Foundation' and is run by the charity, the 'PBC Foundation'. Their advisors are lovely, learned and helpful, plus the site is an amazing community, full of great people, fellow PBCers, who can help on most aspects of PBC. There is also a huge amount of really up-to-date info on the 'PBC F' website, and they work with the leading PBC specialists.

Have a look on the site, talk to them, and join - it's free - for loads of extra advice and info. Meanwhile, don't look at too much online stuff about PBC, as unless it is from respected peer-reviewed, medical research journals it is not always trustworthy. Most of the stuff online about PBC is out-of -date and overly scary.

Hope this helps, try to not worry, have fun, enjoy yourself and try to distress.

Take care

[GrittyReads]

Sorry ... that was supposed to be 'de - stress' !! Doh!