Monitoring Urdsfalk

[HummingBirds1944]

I have been on Urdsfalk for 10 months and have had 3 appointments canceled

How often should you be monitored?

[Cressy]

Some of us are being checked every six months, some annually. I have not seen my consultant for three years but I think it may depend on the stage you're at. I was diagnosed in 2013 but am still symptom free.

[butterflyEi]

Ideally in the first year it is reassuring to have your bloods taken in the first year to ensure you are responding to URSO. Unfortunately due to Covid many hospitals are struggling to attend to routine matters. If you are concerned because of symptoms contact the secretary to the specialist to see if she can get a message to the specialist. If you generally feel well then you can ask your surgery for blood tests related to PBC and the GP should be able to see how you are doing relative to your initial blood test. Please do ask for copies so that you track your results. Using the PBC Foundation's app is very useful for inputting that data. The PBC Foundation also have regular Thursday afternoon interactive sessions with hepatologists such as Professor Neuburger. Over this last year or so these interactive sessions have been a life line to many of us.

[gillrich in reply to butterflyEi]

Absolutely agree with you the pbc foundation have been amazing and will continue to be amazing for us all c