Primary Sclerosing Cholangitis (PSC)

What is PSC?

Primary sclerosing cholangitis is an inflammatory liver disease that causes gradual scarring, stricturing, and destruction of the bile ducts both inside and outside the liver. Normally, the liver produces bile and the bile ducts transport it to the intestines, where it helps digest dietary fats, or to the gallbladder, where it is stored for future use. When the flow of bile is blocked, toxic bile acids build up in the liver, causing progressive liver damage that can lead to cirrhosis and liver failure. The average time from diagnosis to liver transplantation is approximately 20 years, but this is highly variable. Up to 75% of all PSC patients also have inflammatory bowel disease (IBD), including ulcerative colitis and Crohn’s disease. PSC most commonly is diagnosed between 30 and 60 years of age, although PSC can occur in children and seniors. PSC greatly increases the lifetime risk for developing certain cancers including bile duct and colon cancers.

Who is at risk for developing PSC?

PSC is a rare disease that likely results from a combination of a genetic predisposition to autoimmune disease and environmental triggers. Although some of the genes and environmental factors contributing to the risk of PSC have been identified, there remains much to be learned about the causes of PSC. About 70% of PSC patients are men, and patients of Northern European ancestry and African Americans seem to be at higher risk.

How do I know if I have PSC?

The signs and symptoms of PSC can vary significantly from person to person, with some being asymptomatic for many years and others showing symptoms even at early stages of disease. Common early symptoms include fatigue, right upper abdominal pain, fever, and itching. In some cases, yellowing of the skin and eyes (jaundice) may occur if the major bile ducts are blocked.

PSC is usually diagnosed by cholangiography, an imaging test that visualizes the bile ducts. Elevated levels of alkaline phosphatase (ALP) in the blood usually indicate an injury to the bile ducts leading to further evaluation, typically with a magnetic resonance cholangiography (MRC). If this is not diagnostic or there is need for an intervention, an endoscopic retrograde cholangiography (ERC) may be needed. Bile duct damage can be seen on liver biopsy but is rarely needed to confirm a PSC diagnosis.

What are the treatment options for PSC?

Unfortunately, there is no cure for PSC and no existing treatment that has been proven to slow the progression of PSC. Ursodeoxycholic acid (UDCA, Urso®, ursodiol) is frequently prescribed for PSC and may improve liver tests. Several studies of UDCA have been performed at various doses but have not been conclusive in their findings. Currently, there are clinical trials testing various medications to treat PSC.

Are there any PSC clinical trials currently recruiting at UC Davis?

Please click here to see our active clinical trials for PSC.

Do I qualify for a PSC clinical trial?

Each clinical trial we offer is a little bit different and the eligibility criteria for each study can vary considerably. You can view eligibility criteria for each study on the clinicaltrials.gov website link above, or Contact our Clinical Trials Unit [link to Contact Us] to see if we have a clinical trial that you might qualify for. If you qualify for more than one, we can help you decide which trial is the best for your individual situation. If you don’t qualify, we may have an observational study opportunity available, since the eligibility criteria are typically less restrictive. Some of our observational studies are paid opportunities, as well.

Are there other resources available?

The following list contains links to websites with helpful information for PSC patients: