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PBC Foundation
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Advice regarding medication

Hi after some help, I was diagnosed May time by letter saying I am early stages and that I would require regular check ups but I would not require medication at present, I haven't seen a dr since February, have no idea when my next appointment would be, but a little concerned cause I have read that people go on urso as soon as diagnosed, worried I've been forgotten about, thanks in advance, Michelle

4 Replies

Hi, Michelle.

Perhaps it would help to speak with us directly. We can help you look at where you are and where you need to be.




Get to a liver doctor for treatment if you tested positive for PBC , you need treatment so you may need a second opinion and or a new liver doctor if you have PBC . Let us know how it goes, good luck.


As Robert suggests, please do contact the 'PBC Foundation' - link at the top of the page to their website which has info for home and email contact - and talk to their lovely trained advisors: or, click on the link and contact Robert. Following the discussion, you will be in a better position to go back to your medics, and discuss why you are not being treated.

I would also ask your doctor's receptionist for a copy of all the results of all tests done, so you can see why you were diagnosed. This information, plus reading around on the 'PBC F' website, will help you to understand so much more about PBC. You will feel stronger and more prepared for any debates with your doctor.

If you have been diagnosed with PBC you should have been told exactly why they were diagnosing you, and it is usual to give Urso immediately. I would also expect you to have been checked for all other possible autoimmune conditions, as well as all other liver conditions.

I hope this helps, but do talk to the people at the 'PBC Foundation', plus come back on here and ask as much as you need to.

Take care, Gritty xx


Thank you for your reply, I have spoken to pbc foundation and I have done reading to do, I have rauynards and sarcoidosis as well although no idea if they are connected, I have been forgotten about twice before by hospitals so I don't put a lot of faith in them, I will go back and see my own gp first, thank you


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