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Newly Diagnosed

Newly Diagnosed

A diagnosis of PSC can be daunting. PSC Partners provides resources and support to help you navigate this disease.

What is Primary Sclerosing Cholangitis?

Primary sclerosing cholangitis (PSC) is a rare liver disease that damages the bile ducts inside and outside the liver. Inflammation occurs in the bile ducts causing them to become scarred and narrowed until they eventually become blocked. These blockages prevent the flow of bile which is needed for digestion. As bile becomes trapped in the liver, the liver becomes damaged. Over time this can cause fibrosis and cirrhosis of the liver and eventually liver failure.

PSC progression differs for each person, but it helps to know the basic facts. PSC Partners provides resources and support to help you understand the disease.

Find out more about PSC

How is PSC diagnosed?

PSC can be diagnosed at various stages of progression, depending on how a person with PSC experiences symptoms or if a person is being followed closely by a doctor for other reasons. Many people go undiagnosed for years and only find out there is something wrong through a routine liver blood test. Some are diagnosed because they are having PSC-related symptoms, even if their PSC may still be at an early stage. And some will be diagnosed because they have advanced PSC, and symptoms of advanced PSC have started.

When PSC is suspected, a medical provider follows a process to confirm the diagnosis. Here’s how it typically works:

  • Initial check-up: The doctor starts by reviewing the patient’s medical history, asking about symptoms, and doing a physical exam. They also check blood tests to see if the liver is working properly.
  • Imaging test (MRCP): A special type of MRI scan called an MRCP is done to give a detailed picture of the bile ducts. If the scan shows narrowing or blockages (called “strictures”) in the bile ducts — and doctors rule out other possible causes — this is usually enough to diagnose PSC.
  • Unclear scan results: If the scan isn’t clear, they might do another scan in about a year or take a small sample of liver tissue (called a biopsy) to get more information.
  • Normal scan but ongoing symptoms: If the MRCP looks normal but the patient still has signs of liver disease, a liver biopsy may be done. This helps doctors check for “small-duct PSC” (a less common form of the disease) or see if something else might be causing the symptoms.

What should I expect when diagnosed with PSC?

Everyone’s PSC journey is different. In general, PSC is a chronic progressive disease that currently has no treatment that has been proven effective at slowing PSC progression or providing a cure. There are however treatments and medical interventions that may help with symptoms or complications related to PSC.

It is not easy to predict the rate of progression for any one person. Some patients need transplants sooner, and some never need a transplant.Typically, PSC progresses slowly, with current studies estimating the average time from diagnosis to liver transplantation to be 15-20 years.

You may be experiencing symptoms such as abdominal pain, itching, or fatigue or you may not have any symptoms at all. It is important to familiarize yourself with the disease to recognize the signs of PSC. One complication that is important to know about is acute cholangitis, a bacterial infection of the bile ducts, that can develop at any stage of PSC and requires prompt treatment.

Find out more about PSC symptoms

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If you are newly diagnosed with PSC, we can help.

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