I am new to this website, so a little about me.

[Dibbs64]

I have had pbc approx 3 years now, only picked up from new GP, as my usual GP retired, the new one wondered why my liver levels were high and done tests, i have had liver biospy and bone scans which has shown ostopenia, which i take calcuim tablets for, i take Ursodeoxycholic acid 3 a day,the only symptom i seem to have is tireness, but could be put down to age and life in general.I also have under active thyroid problem, which I have had many years... I have 5 children and 3 of them have auto immune conditions, one arthritis, one Crohn's disease and one Psoriasis .

I am 49 and live in essex uk

[highwood]

Hi Dibbs64, I was diagnosed May'12 but could have had PBC since 2006. At the moment I am not taking Urso, I also have Osteopenia and take calcium + vitaman D combined, I live in Essex, Where abouts are you in Essex, i am in Chelmsford it would be interesting to know who you are seeing for PBC and what hosp. you are attending. Take care may you have a blessed 2014 and lets all hope and pray they find another drug we can take. Sue

[Dibbs64 in reply to highwood]

Hi sue, I live in old harlow, I am under dr ghosh at princess Alexander hospital, harlow, which is handy as I work there. When I first got diagnosed I was under dr stoner but he has now left and gone private at the rivers so I've heard... It takes a lot to get your head around pbc, I thought they must have it wrong,especially as I had my gall bladder out previous and apparently gall bladder was stuck to my liver, so they had to do a bit of chopping lol, that's my i thought my liver tests were abnormal, they say its just coincidence.

I hope 2014 is a lucky year for all of us.

Take care deb

[highwood in reply to Dibbs64]

Thanks for replying Deb, I am under Dr Stoner at Springfield Medical Centre under choose and book, I am hoping to change consultants as i don't think he knows a lot about PBC. How did you find him. Take Care Sue

[Dibbs64 in reply to highwood]

I only saw him twice,but I must say dr ghosh seems more informative, he asked me to join a pbc study at addenenbrooks, Cambridge, he said there was about 250 patients with pbc in my area and that's the ones he knows about!... Wondering if there is environment link going on. Although I have heard dr stoner has a very good reputation in gastro field, I think because pbc is rare, the doctors do not seem to know a lot about it, when I have attended a&e with my son for his Crohn's , they ask family history when I mention pbc, some doctors say 'what's that' lol

[highwood in reply to Dibbs64]

Read up on Dr Stoner before i saw him and was very impressed, but as you say PBC is rare and not all dr's know anything about it. Hopefully transferring to Broomfield under Hepatologist fingers crossed. Need to go back on Urso had some very bad side affects with Urso Gal, want to go back on Urso Falk but it is expensive, may ask to try the tablets, quite a few people on pbc digest say they are good. Hope all stays well with you and your family.