hi every one,is anyone out there a non responding,AMA/210 POSITIVE PBCer?

[denise1]

would be grateful for more information if anyone can help please,thankyou denise xx

[kimphoebe]

Hi Denise that would be me, I have been gp210 postive and ama postive for a while now. Don't know a lot about it though, and on my last visit to Birmingham was told I was a nonresponder as well. Was diagnosed in 2012 and was told it was early stage now 3 years later I'm at stage 3.

[denise1 in reply to kimphoebe]

hi kimphoebe,thankyou for your reply,how did q.e. find out you were at stage 3?.i am at the q.e.aswell.denise x

[kimphoebe in reply to denise1]

Hi Denise, it was my local hospital who done a fibroscan last March the score was f3 which I believe is the same as stage 3. Q.e. are not keen to stage the disease but when I told them they decided to scan me every 6 months instead of yearly. Have you had a endoscopy yet to screen for varices.

[LisaC22]

Hi. Have you both heard about the new drug that is currently being put through for URSO non-responders? Obeticholic Acid? Might be worth discussing with your doctors if you haven't already. Here's the link to the makers website: interceptpharma.com

[denise1 in reply to LisaC22]

hi lisa,thankyou for your reply,yes i have been told about the new drug for nonresponders i went to the q.e. for my 6 monthly check up.should be available next year.hopefully it will work for people.thanks again.denise.x