Gastro appointment

[Elanie]

Hi I live in uk and was diagnosed November 16. I had my first GI appointment in March who sent me for a bone scan, this came back fine, I was not prescribed any meds. My main symptom is fatigue. I now have a second appointment on Thursday, can anyone tell me what I should be asking, and should I be taking medication

[PBCRobert Partner]

Hi, Elaine.

We have lots of information for you.

If you can, call the Foundation before your appointment and we can go through what you know, what you don't know and what you need to know...

Yours,

Robert.

[teddybear7]

Yes exactly join the PBC foundation, they're a godsend with there help & info. I'd have been lost without them. But one thing you must ask regarding meds is if they are going to give you urso ( urseodeoxicholicacid. Spelling might be a bit out lol )

[Jlruggie]

Elaine,

Why didn't your doctor prescribe Ursodyoxycholine? Would you ask and let us know?

Jlruggie

[Elanie]

Thank you for your advice and support. It meant I felt confident in asking questions to know a little more about my current status. It turns out that although my AMA levels are positive the remaining blood tests are currently in range. The consultant has sent me for up to date blood tests to check on liver functions and also for a fibroscan. Not been prescribed urso as now saying its only a precursor to pbc and may not develop and as such Urso will not help. This is different from my last appointment when they told me it was pbc. Consultant will keep checking the other blood markers and monitor me for further development. Without the information gained today from Robert from the PBC foundation who sent me the latest EASL guidelines.

Thank you again, this site has been really helpful as well as the foundation.

[Elanie in reply to Elanie]

Sorry I meant to say without Robert and the PBC foundation who sent the guidelines I do not think I would have been able to focus my questions well enough to get the answers I needed. So thank you so much.