Living with PSC: What to know about primary sclerosing cholangitis

An estimated 1 in 10,000 people have primary sclerosing cholangitis (PSC), a condition that impacts the bile ducts that run between the liver, the gallbladder, and the small intestine. The liver produces bile to transport to the gallbladder for storage or to the small intestine, where it aids in the digestion of fats. In the case of PSC, there is inflammation in the bile ducts (cholangitis), leading to scarring (sclerosis) that narrows the ducts. This leads to the bile not being transported effectively, allowing it to build up in the liver.

Though PSC itself doesn’t typically have symptoms in the early stages, those living with the condition are more prone to developing autoimmune diseases and face an elevated risk of cancer. Fortunately, by understanding more about this condition and its impact, we can empower patients to participate actively in their treatment plans.

What to know about PSC

Primary sclerosing cholangitis symptoms

The symptoms of primary sclerosing cholangitis can vary between individuals. Many have no symptoms at diagnosis, and most cases are discovered during routine testing. When symptoms do appear, they often include vague maladies such as fatigue, itchy skin, and pain in the upper right quadrant of the abdominals. As the condition progresses, symptoms can include a swollen abdomen, an enlarged liver, jaundice, fever, and unintended weight loss. 

What is the life expectancy for primary sclerosing cholangitis?

After a person is diagnosed with PSC, life expectancy typically averages between 10 and 20 years and can be even higher for individuals who receive a liver transplant. Lifestyle choices can also have an impact on life expectancy, and medical professionals recommend individuals with PSC avoid alcohol, get plenty of sleep, manage their stress levels, and create good habits around exercise.

Primary sclerosing cholangitis treatment guidelines

No known intervention for PSC slows or reverses liver damage, so the main focus of treatment for primary sclerosing cholangitis is on managing complications and keeping a close eye on the disease’s progression. Common symptom management options mainly focus on solving the issue of itchy skin, which is done through:

  • Bile acid sequestrants that bind to bile acids responsible for itching 
  • Rifampin, a type of antibiotic that tends to help itching in those who can’t take sequestrants
  • Antihistamines can be helpful for itching so severe it interferes with sleep
  • Opioid antagonists which may reduce liver-disease-related itching at the brain level
  • Ursodeoxycholic acid (UDCA), also known as ursodiol, is a naturally occurring bile acid that may increase the absorbability of bile

In addition to these interventions, individuals diagnosed with PSC may also need nutrition support because it can be difficult for the body to absorb certain vitamins. Doctors often recommend vitamin supplements and a nutrient-rich diet for those with PSC.

Because of the many uncertainties surrounding PSC, conducting research is vital to achieving medical breakthroughs, and the continuous need for volunteers remains paramount. To learn more about current clinical trials seeking participants, use the button below to get started.