Berlin
Hello!
I am 29 and just have been diagnosed with PSC. Apparently I have had this for 20 years or so. It has been one of those medical mystery things since it's a rare condition. I read that a lot of people get this if they have gastointestinal issues. I am without gallbladder and a large intestine because of colitis. My symptoms were increased liver eynzymes and a LOT of itching, oh goodness it was horrid.
My doctor put me on something called Prevalite, something to help with the intense itching. Also with this conditon, you apparently do not absorb vitamin D, so he put me on calcitrol. There was a medicine called Ursodiol that he had me on (very expensive and it was a lot of pills) but i quit taking it, went back to him and he said in large doses it could be harmful, so he was not upset I d/c'd it without his permission.
Unfortunately, there is no cure for this disease. Transplantation is the only thing that will work. Only way to see how your PSC has spread is through blood tests and liver biopsies. I recently was told my liver was shot, then got my bipsy and there was no scarring whatsoever. So things are looking good.