Just been diagnosed with PBC

[nunbrook]

I had never heard of PBC 6 weeks ago so was totally stunned when my GP explained what is was. Seen the specialist and had an ultrasound and a bone density scan being arranged. I haven't had any symptoms apart from pain in my ribs and right hip which I put down to age. I am now on the Urso tablets and see the specialist again end of Nov.

Don't really know what to expect now. It is good to know there are other people out there and don't feel as scared about it now.

[LindyRich]

Sorry you have to be here but welcome to this lovely group.

Please join the PBC Foundation. It is free and open to anyone no matter which country they live in. pbcfoundation.org.uk

It is accurate, up to date and understandable.

I was in a similar situation to you two and a half years ago. It's a scary place to be at first. I looked PBC up on Google and really scared myself. There is some useful info on Google but it's difficult to filter out the rubbish when you know very little about PBC.

Everyone has a different journey with this pesky disease. As you have few symptoms you could be in the very early stages. Time will tell.

There are people in this group who have had PBC for decades and live a normal life. Don't let it get to you. Keep coming back here for support.

None of us are doctors, we are just people with PBC, so we know what it feels like. We understand.

Take care

Kind regards

Lindy

[Buddy2017]

I was diagnosed 8 years ago because of the pain in my ribs ,I am one of the lucky ones who still doesn't have any other symptoms . Good luck to you and I hope you too remain symptom free .

[Michiganpbc]

You have come to a good place here for support. Its a rare unique disease that most have never heard of. Stay positive and take the med dont read too much from the internet that isnt from a reputable medical site it scared me when i did . Its a slow progression disease and most will die from something else not PBC. The urso has given me more side effects than the disease but everyone is different and you may have no urso side effects. Its very common to have osteopenia in PBC and other autoimmune issues so follow up with your doctor closely if you start getting new symptoms. I have the osteopenia which is common in PBC and the treatment is calcium with D.

Keep all copies of your labs and tests in case you get a second opinion or move and change doctors. Learn as much as you can about PBC then you will feel less anxious. Watch your labs for changes and keep up on follow up labs and tests. Lots of good people on here with real experience to help you along the journey.

[ENuk]

I was diagnosed a few months ago after a routine blood tests and scan. Thankfully few symptoms at present although I do have fatigue. Are you in the UK and under the care of a specialist hospital?

I have felt pretty positive as there does seem to be treatments that can slow down the condition and the PBC foundation fact sheet is very useful.

[nunbrook in reply to ENuk]

I live in the UK in the Harrogate area. I'm hoping it's in the early stages and that the Urso tablets will help but time will tell. Going back to see the specialist end of Nov so hopefully will know more then. It's a lot to get your head round!