Primary biliary cholingites

[Jasper05]

Just wondering if anyone on here has pbc and how they manage with the changes also what medication they receive x

[AyrshireK]

Just incase you don't know about it there is the PBC Foundation fir extra expertise with this condition. pbcfoundation.org.uk/

And they have their own forum here on Healthunlocked.

pbcfoundation.org.uk/?s=Hea...

Best wishes, Katie

[Aaron22]

Hi, I too have PBC, diagnosed May 2022. Im prescribed Ursodeoxycholic acid which upto now has controlled it. Welcome ☺️

[Jasper05 in reply to Aaron22]

Hi Aaron I was diagnosed in 2019 unfortunately I could not tolerate ua I'm waiting on a new drug that's just been licensed but no guarantee it will help as my pbc has become severe kaz

[Aaron22 in reply to Jasper05]

I'm so sorry to hear this x

[Stephskie2005]

Hi Jasper, I’ve been on 900mg daily of Ursodiol (Ursodeoxycholic acid) for a while now and it is finally very slowly starting to bring my LFTs back down in the right direction 🤞

[Readlots]

Hi Jasper, I have PBC and my Mum had it before me. Coming to terms with a diagnosis can be hard and it feels like a ehitleind when the dropping to start treatment. Don’t be afraid to ask them to explain what they are doing and why. Often they assume someone else has told you and you know but you don’t. However, with treatment some people recover and live a good life. Basically with BC, your immune system is attacking your liver and damaging it. This can lead to your liver suffering ( fibrosis) and scarring (Cirrhosis). There are different stages. Please ask someone to explain what’s happening - they know what they are doing and do it all the time. Good luck

[Jasper05 in reply to Readlots]

Hi thanks for your information I've been told to a degree what is happening but I'm being passed around the difference doctors one doctors says I don't have portal hypertension but a recent ct scan says I have they are putting the fear of god in me by saying I could bleed to death in very upset at the moment and living in fear 😨

[Readlots in reply to Jasper05]

It is a scary situation to be in, not helped by the lack of control and doctors arguing between themselves. However, you are in the right place and lots of people on here have had bleeds but survived. Once you’ve had the varices banded you’ll be good to go again. Again, that’s quite routine for portal hypertension although I know it must be scary. Fingers crossed they have you sorted and discharged for Christmas