Join the Primary Sclerosing Cholangitis (PSC) discussion forum for patients, friends and families affected with PSC.
We love to hear your stories and information about treatments, symptoms and side effects.
Does ercp findings rule out mrcp results when it comes to diagnosis…?
I think that ERCP can be better/more accurate than an MRCP.
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Hi. I am newly diagnosed with PSC. I also have UC. My liver enzymes are normal with the exception that my ALP fluctuates between 100 and 200. I am meeting with my hepatologist in September. He is suggesting that I should go on Urso. Just wanted to see if it is normal to start using Urso from the beginning of the disease. My MRI shows a normal liver, etc. The only issue was the intrahepatic duct. I have no symptoms and I am starting a new drug for UC and may need surgery if this drug doesn’t work. My UC started at age 16 but I did not have PSC at that time. I am now 22. Many thanks for your input.
Zmo,
Thanks for your post. Regarding URSO, yes it is normal for PSC patients to start taking it at disease onset. Now, of course, that will vary between hepatologists, but for me and others that was the case. Keep in mind, with PSC, you start out with a perfectly healthy liver, but then as the disease progresses, when the bile ducts start to have that beaded appearance that slows down normal bile flow, then that bile starts backing up and destroying liver cells. Over time, you end up with cirrhosis of the liver. The URSO helps to thin that bile to allow more to flow out and around those beaded ducts. It should be considered a quality of life medication. It is not a cure for PSC. I hope this helps. I was on 1200 mg a day of URSO across 4 years from diagnosis to transplant. Please stay in touch and let us know how you are doing. We are glad for you to contribute to any of the posts you see.
Mark
Nice community, very helpful.