Future Monitoring

[hells456]

I was wondering what level of monitoring to expect in the future.

I was diagnosed at the end of December and have had an ultrasound, endoscopy, bone scan, three consultant appts, and blood tests about every six weeks since then. I presume this close monitoring is just until I'm stable, how often do you have tests and see doctors after that?

[gwillistexas]

Hello. I’ve been on Ocaliva since the beginning of diagnosis 3 years ago. My labs were every month until my numbers came down. Then it was 4 months. I see my hep every 6 months.

[hells456 in reply to gwillistexas]

I'm glad it's working for you.

[ninjagirlwebb]

I see my hepatologist quarterly & he orders my bloodwork.

[hells456 in reply to ninjagirlwebb]

Thank you, good to know

[gwillistexas in reply to ninjagirlwebb]

I’d prefer closer visits than 6 months. I guess he feels that’s often enough unless I have problems.

[ninjagirlwebb in reply to gwillistexas]

My hepatologist suggested to see him every 3-4 months & I decided quarterly is my preference for bloodwork. He runs all my bloodwork & prescribes all my meds including the urso.

I am skipping my appointment this quarter because I don’t want to venture to any doctor’s appointment yet. Will resume in August.

[Biddyb]

Hi I was diagnosed over 10 years ago. My bloods have been done every 4 months lately as my readings fluctuate so much but since the virus out break I’ve not had any bloods taken for a while. I’m stage 1 still with no cirrhosis so figure there is more to be aware of than PBC for me at the moment. No idea why my results yo-yo as I do all the right things, it’s a very strange condition for sure. It’s my ALT mainly that’s raised but consultants don’t seem to worry. My annual appointment was cancelled back in late January so the hospital must have known this pandemic was on its way. I’ll get in touch with my GP when things calm down. Guess if your worried you could call your GP or consultant even the foundation for advice. Good luck

[hells456]

Even with your fluctuations you seem to be well controlled. Do you usually have bloods once a year along with your appointment?

All my numbers were raised, but they seemed more worried about the bilirubin than anything, but my numbers are coming down so hopefully my fibroscan next month will have edged away from cirrhosis.

[CKH73]

I have bloodwork every 6 months with my pcp. If / When I have other concerns, I will go to the specialist...my labs are shared with both drs so the specialist can see if there’s any extra concerns.

[kimphoebe]

Hi there

I have my bloods done every 3 months, us scan every 6 months and fibroscan yearly. Stage 1 cirrhosis at mo. Not had bloods done since January and want get them done till September. Was on trial till November last year till it was stopped for safety reasons. So can’t imagine how my liver is going to look by September as nonreponder to uso 🤦‍♀️

[gwillistexas in reply to kimphoebe]

🙏🏻