Now I have PBC.

[Carmelite66]

Two days ago diagnosed with PBC. A little worried about how this will impact on my daily life?

[butterflyEi]

Hi Carmelite66

Welcome to our merry band but sorry you have to be here. I was diagnosed in 2006 although I believe I had symptoms at least 10 years before. I cannot say that it changed my life as it was caught early at the asymptomatic stage. The only main impact for me has been the so called itch of PBC which is currently being treated. For others the impact can be much greater. Everyone seems to develop at different stages with differing problems. I hope you have been started on ursodeoxycholic acid as this will slow down disease progression. When I was first diagnosed it was pretty scary but I read I was more likely to die with PBC than because of it. Some of the stuff on the internet can be quite unsettling so choose well respected web sites.

If not already a member join the PBCFoundation, free to join, and in the members section there are back copies of the Bear Facts magazine with some clinical articles and some video to help you. The Foundation has just started webinars and these video chatswill be available on their web site as time goes by or you can link into the next chats. Look on here for webinar connection Robert posted a little while ago. I cannot look back as I am on a tablet and I am not that clever with it. Also if you are in America then you can find PBCers.org which is an active group. There is also a Canadian Society which has useful information on their site. LiverNorth in the UK is a volunteer run charity which is also a useful source of information.

You will no doubt have lots of questions, I do after all this time, and the forum has a great bunch of people with various experiences who will no doubt be along soon to add to my effort.

Best wishes

[Carmelite66 in reply to butterflyEi]

Thank you so very much for your kind word's, also feel encouraged by your experience and knowledge. I will look up live north UK.

[Michiganpbc]

Hi there, I got diagnosed this last year I am feeling better after starting then URSO. I have upper right pain where the liver sits, a common complaint with liver disease . You will find many kind knowledgeable people on here. Feel free to ask us any questions and vent.

[Carmelite66 in reply to Michiganpbc]

Kind people have replied to my concerns, so feel less lonely.

[liver-bird]

Hello - welcome to our exclusive club. I was diagnosed 3 years ago and thankfully find it doesn't trouble me much at present. I get a little itchy and a little tired but that's all 😃. I hope you will be the same. I respond to urso and it has improved my lfts.

You will get lots of support from this group as I find the rest of the world doesn't really understand Pcb.

I would say take your urso, eat well, exercise and pace yourself and try not to worry and stress. There is plenty of life after PCB 😄

[Carmelite66 in reply to liver-bird]

Thank you so much, seems to be a journey, but got my bus pass.

[lauralocks123]

Hi there, I'm not sure of your situation so can only tell you my own experience. I'm a 29 year old mother of one. I was diagnosed after having my first child 15 months ago. I have no symptoms apart from elevated liver functioning tests so have been put on ursofalk to help. After 3 months of ursofalk those have regulated and are now normal. It is a shock when you are first diagnosed. I would advise not googling though I'm sure you already have. Join the PBC foundation and if you have questions talk to people on this forum or your doctors. You will not die from this. Take the medication you may be prescribed, follow the doctor's advice and you will be fine. Limit Stress. Enjoy every moment of your life. Stay positive and focus on the now. Honestly you will be fine xx

[Carmelite66 in reply to lauralocks123]

Thanks so much for your message. I am deeply moved by the response to my post from people with PBC. All of which like yours has been positive and heart warming.

Best Regards Carmelite66.

[Carmelite66]

Oh gosh what can I say.

Wonderful people.

Thank you so much for your messages.

[Rockie]

My Specialist call me unique, as we all are, because it is quite a rare disease.