Posted 7/11/2018 11:50 PM (GMT 0)
Hi there, I also have PSC. I don't get on here much anymore but saw your post and wanted to reply. I was diagnosed after my Jpouch surgery. At first it scared me to death but I am doing OK. I take one medication daily for it Ursodiol and my doctor monitors my liver numbers closely. I also have to get regular MRIs and ultrasounds as I have a gallstone they are watching. The main issue I have is itching but I hate the medicine for it so I don't take it. I have a lot of joint pain lately that I'm going to mention at my appointment. I think is related to this. I have had three ERCPs by well qualified doctors in SW Ohio and they couldn't get into bile ducts so they just leave them alone. There is a really good Facebook group that I belong to for PSC patients. Hope you are doing well.