PBC, now cirrhosis

[Beatrice110924]

HiHad PBC diagnosed for 5 yrs but Alp up since 2012.

Been on Urso for 5 yrs and great.

In 2021 my ALT was slightly out of range but ignored by the specialist.

GP flagged it up January 2023 and I had an ultrasound just showed enlarged spleen.

Fibroscan in April jumped from stage one to bottom of stage four.

Gastro recommended Budesonide steroids incase it was AIH overlap for 3 months. Left me on them for 6 months and my face to face apt after 4 yrs ! Kept being cancelled.

In November my ALT jumped to 109.

Eventually saw him a month ago and ALT was 250 !

Had a liver biopsy yesterday and the Dr said he could see cirrhosis on the ultrasound he carried out before the biopsy.

So guessing I have compensated Cirrhosis but have no faith in the Gastro and none of my family or husband know enough about PBC to talk about it.

Has anyone had similar experiences ?

Ps I'm 74 but pretty fit but guessing I won't be offered a transplant.

[kingsnorth]

That sounds like you have been neglected by your doctors l have 6 monthly blood tests and yearly fibroscans l hope they now check you more regularly. I'm 73

[kingsnorth]

Beatrice their is a PBC link on Health unlocked l suggest you join that as well as the Sjogrens link x

[Beatrice110924 in reply to kingsnorth]

Thank you for your input.I joined PBC foundation 5 yrs ago and have emailed a few times. Once it went into their junk and then I asked for the best Hematologist to see privately as Prof David Jones doesn't have private patients and I never got a reply so I gave up.

[Beatrice110924 in reply to Beatrice110924]

I don't have a problem with my Sjogrens as the rheumatologist is great.

[kingsnorth]

my rheumatologist is rubbish l haven’t seen or heard from him since before covid. My gastroenterologist is really good though l think it’s a postcode lottery. I live in Kent! I am a member of a FB PBC group and they are really friendly and informative PBC Britain (UK only)

[Beatrice110924 in reply to kingsnorth]

It's a pity they're not all on the ball.I'm on Facebook but I don't use it except to read what people say but I'll ask my granddaughter to sort it for me.

I did as ask if he thought the COVID jabs had affected my condition and he said it was possible as I know that in some people the cancer suppressant gene was weakened.

He told me 4 yrs ago that because of my age he was 99 % sure I would not reach cirrhosis !!

I'm guessing you're still ok.

Just need to know if it can be slowed down by medication as Urso is no longer working.

Good luck 🤞

[kingsnorth in reply to Beatrice110924]

do join that FB page everybody on their has PBC and are from all over the country so somebody will have information of how their particular health service works. I think there is another medication that can be given alongside URSO which can stabilise it my gastroenterologist said that if Urso stops working or doing it’s job there are now other medication you can take alongside that can slow down the disease progress. Don’t slip through the net

[Beatrice110924 in reply to kingsnorth]

Yes I will join thankyou.Obeticholic acid is one and there's a new one coming out from America called Elafibranor which is in the pipe line but I don't know whether either of these can slow down the cirrhosis??

We'll see what he says on the 4th March.

Thank you

[kingsnorth in reply to Beatrice110924]

good luck please let me know how you get on where do you live

[Beatrice110924 in reply to kingsnorth]

Preston, Lancashire.Where it rains all the time ☔🤣🤣.

I'll keep you posted thanks

[kingsnorth]

please do. I just had a brief look at the PBC page on here and see you are still on their and 4 years ago l spoke to you so pop over to that page and have a look. Good luck

[Beatrice110924]

Really, that's a coincidence.I definitely will .

It's very nice for you living in the Garden of England !