WARNING! You may not have PSC!
I was diagnosed with PSC nearly two years ago by a very reputable hospital and doctors. I was 63 years old at the time of the diagnosis. Classis symptoms and had an ERCP soon after to promote bile flow and help emzynes. That helped for about 15 months. In the meantime, because a liver transplant was probably going to be in the cards, I switched to Mayo Clinic and a different doctor. After about a year at Mayo Clinic, based on my MRI results that showed my pancreas was enlarged and some other indicators, the MD Fellows thought that it was worth investigating if my malady was autoimmune pancreatitis. Autoimmune pancreatitis responds to treatment with prednisone. Based on the response to the prednisone, it is looking like PSC diagnosis was not correct. Luckily, Mayo Clinic is at the forefront of autoimmune pancreatitis investigation in the US.
Do some research and don't just accept a PSC diagnosis. Especially if you are older than 30. If you have autoimmune pancreatitis and don't treat it, the outcome will be the same as PSC.
Thanks I’m looking into it. Knowledge is Power.
FYI - I was on 40 mg/day of prednisone for 5 weeks and then have been tapering off 5 mg/day per week for the past 6 weeks. There were some blood tests that Mayo did that are not conclusive, but may indicate a possible autoimmune situation. At least you are dealing with a great organization.
I was dx'd with had autoimmune pancreatitis 6 yrs ago after a few mths of stenting for common bile duct obstruction, exacerbated by a thick, sludgy bile. There is a diagnostic test - IgG4 - for AIP, possibly not 100% reliable though. Mine was 8x higher than nrl range. Prednisone initially helped, I was fine for 2 yrs, but then flare-ups/attacks recurred and several more runs of prednisone x 3 mths each would only help on a very short-term basis. What I've got is 'AIP-SC' - secondary sclerosing cholangitis to the AIP - which unfortunately is now behaving like primary sclerosing cholangitis and the intrahepatic duct is in not good shape at all.. Not everyone with AIP responds to prednisone and liver transplant is indeed down the road for me. Also, not all AIP patients have bile duct issues, depends what part of the pancreas is affected. I very much hope the prednisone works for you. Sometimes a second hit is necessary to do the job. BTW, I just had ERCP #11 yesterday for stent change! The stent should have lasted 3 mths but became obstructed 5 wks later..... arg.