Key questions to ask heptologist? - PBC Foundation

PBC Foundation

9,374 members7,943 posts

Key questions to ask heptologist?

Waxxy99 profile image
4 Replies

Hey guys, I'm a 32yo male. I was diagnosed with pbc about 5 yrs ago and have been on ursofalk ever since. I also have suspected sjorgdens syndrome. The pbc seemed under control until about 6m ago when I started experiencing weight loss, v pale frequent stools, v dark urine, jaundice and more extreme fatigue. I had a ct scan and it picked up my gall bladder was infected, I got some antibiotics and it seems to have cleared the infection but it needs to be removed. My gastroenterologist has referred my to a liver specialist as my bilurubin has tripled to 95. I have portal hypertension but no varices yet. What are the key questions I need to ask at this point? Cheers all.

Written by
Waxxy99 profile image
Waxxy99
To view profiles and participate in discussions please or .
Read more about...
4 Replies
littlemo profile image
littlemo

Hi Waxxy are you on Urso? Prob the best questions to ask are at what stage of the disease you are at and what treatment would help your current situation? All the best take care. x

Waxxy99 profile image
Waxxy99

Thanks. I am on urso and have been since I was diagnosed. I guess it's come as a bit of a shock knowing my liver has deteriorated after being pretty stable for years. My gastroenterologist has mentioned transplantation, I think the realisation that is now becoming a more likely potential outcome for me is quite daunting. I've just had a baby and that changes your perspective a lot.

Anne123_45 profile image
Anne123_45 in reply to Waxxy99

Aww waxxy I hope all goes ok for you.. Keep us posted.. Congratulations in the baby :-)

Anne123_45 profile image
Anne123_45

On the baby

You may also like...

Seeing a private specialist. Possible PBC? Advice and questions to ask.

this isn't the usual one for PBC, I'm assuming this means not M2?) but have been told the wait is a...

Heptologist comment on brain fog

will have multiple bowel movements daily. I also suffer from ulcerative colitis & already have three

What questions should I be asking my consultant?

with PBC, have started Urso and am going back to see my consultant on Tuesday where he will have...

Advice on what questions to ask consultant gastroenterologist?

I was diagnosed with PBC one week and one day ago (feels like a year ago!). This forum has really...

PBC fatigue vaccine question

Hi Everyone. I was diagnosed around 10 years ago with PBC. Urso worked at first, then they had to...