Newly Diagnosed - Confused

So this week I was diagnosed with PSC, and I'm a little taken back and confused by this diagnosis. My Dr explained to me what PSC is, but he didn't go into much detail about the disease, and was reluctant to talk too much about it. So when I got home I started a little research. Now there isn't much information available on the disease, but what is available doesn't sound in keeping with what I am experiencing. In fact I wasn't even given an ERCP which I read is the gold standard for diagnosing this disease. I am going to be asking my doctor for further testing, but in the mean time I was looking to talk a little with people who are more knowledgeable on the subject.

Basically the reason my evaluation for PSC started was because my blood ALT and AST came back slightly elevated. Something which I've had some positive on a number of occasions over the last 5 years, but has always only lasted for a few weeks and then returned back down to normal levels. Except this time they've stayed slightly elevated for about 4 months now. Reaching as high as 150/70 (ALT/AST). Viral Hep has been ruled out since I tested negative on 2 different occasions. I've had an Ultra Sound that showed margiinal dilation of the common hepatic duct (5.7mm) but that's it. My alkaline phosphatase have come back normal each time over the last 4-5 years, and so has my bilirubin, GGT, and Serum Proteins. The only other thing thats come back slightly elevated is my WBC, albumin, eosinophils, and monocytes. From my understanding usually people with PSC have elevated alkaline phosphatase, or it fluctuates between normal and high which mine doesn't. I did notice that at one point when my ALT was at it's highest (150) that my Alkaline phosphate and GGT did increase a little compared to other times, but still remained under the normal limits. I am experiencing some fatigue and nausea in the mornings and at night time, but no itching, and I have some days that I feel completely normal.

I guess I was wondering if anyone else with PSC has all these constantly normal phosphates and GGT levels, and with only elevated ALT/AST. I've already made another appointment with my doctors, but in the mean time it seems all I can do is think about this PSC diagnosis. It's more of the possible uncertainty that's bothering me. Any input would be greatly appreciated.

The antibiotic, vancomycin, has did wonders for my daughter who has UC and PSC. Her blood readings has improved 500%.

Dear M,

Welcome to the LWPSC forum, but I'm sorry you may have to face this disease! I have a few comments for you: It is a very rare disease that seems to affect each person differently and can be divided into large duct or small duct disease. With a dilated common bile duct you most likely, if you have PSC, probably have the large duct type. Most of us would recommend you see a hepatologist rather than a gastoenterologist. You are right that an ERCP is the best test for making the diagnosis, but sometimes the less risky MRCP (MRI of the bile duct system) and liver biopsy are used to make the diagnosis. My numbers have been similar to yours and variable, except I my bilirubin has usually been elevated. If you haven't yet, stop drinking alcohol until you are told by a hepatologist that it's OK.

We all have a lot to learn about this disorder. I'm looking forward to learning more at the PSC (Partners Seeking a Cure) Conference in Pittsburgh the last weekend in April. By the way, no-one has responded to my query about their experience going to this conference in past years.

Hope this is helpful. Stay active and healthy!


I guess it was the scan that prompted him to say that. Though everything I've read said they look for elevated phosphates and GGT levels. But you said your ALP was elevated or high at one point?