PBC Foundation
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My history of PBC

I only found out 5 years ago that I had this disease purely by luck. I was getting a lot of pain in my wrist and leg joints so thought I had better see my docs. Had a blood test done no was not arthitis but PBC. A bit of a shock as I also have type 2 diabietes and thyroid problems(35 years and heridatary). I am experience a lot of other health problems mainy catching whatever bug going around which has resulted in a lot off from work which makes me think the old immune system is shot. I have also dicovered,in my case, that PBC is thought to be heridatary as in the last two years I have lost two maternal cousins(sisters) who both had PBC for many years. It can be known to skip generations. as a precaution both my daughters have been tested both negative so far.

Problem is I do not know how long I have had this as some of the syptoms are throid/diabetic related. So far it has not progressed too far so guess I am lucky.

2 Replies

The symtoms can be many or not too many?? Muscle pain, joint pain, stomach pain,nausea, sore eyes, dry mouth, exhustion, swollen lega/hands,brain fag, itch etc or simply none of the above. It is difficult to differentiate when or if you have other ailments. My only help has been posting questions here ,some people seem pretty ok, others not so. Some have good days others not. This may not be too positive as today my positve has gone out the window, but try posting lots of questions and it will help. Wish you some light at the end of your tunnel :)


I was diagnosed about six years ago during routine blood tests in relation to scleroderma, arthritis, fibromyalgia and Raynauds. I've a list as long as your arm but it was when my Rheumatologist ran the normal blood tests and she wrote to me to ask me to go back to see her. Then she told me I had PBC. I didn't really think about it much - I have so much illness I just thought it was another one to add into the mix - I don't mean to imply PBC isn't serious because it is it was just with having so many other illnesses. My sister was diagnosed 4mths after me as PBC is a genetic illness. I just keep taking the tablets and hoping the Urso will slow it down. My Consultant gave me as much information as she could that day but the book from the PBC Foundation - Living with PBC - has been so helpful. :-)


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