Overview
Bile is a digestive fluid made in the liver and carried by tubes called bile ducts to the intestine. In primary sclerosing cholangitis (PSC), the ducts inside and outside the liver become inflamed and scarred, forming narrowed areas (strictures). Bile then flows poorly, and over many years this can damage the liver and lead to cirrhosis (advanced scarring). "Primary" means that no outside cause is found.
Symptoms
Often none at the start; found through abnormal liver tests
Tiredness
Itching of the skin (pruritus)
Pain or discomfort in the upper right abdomen
Jaundice (yellow skin and eyes) and dark urine
Fever and chills during bile duct infection
Weight loss
Self-Care Tips
Attend all scheduled blood tests, scans and colonoscopies
Avoid alcohol and do not smoke
Stay active and keep a healthy weight; weight-bearing exercise helps bone strength
Get vaccinated against hepatitis A and B as advised
Report fevers promptly, because duct infections need quick treatment
When to See a Doctor
Seek medical care promptly if you notice: Fever with chills, abdominal pain and jaundice; Vomiting blood or black stools; Unexplained weight loss, worsening itching or jaundice, or new constant pain; Confusion, drowsiness or abdominal swelling.
Why it happens
The cause is not known. It is thought to involve the immune system and genetic factors, perhaps together with something in the gut environment. It is not caused by alcohol, diet or infection that you caught, and it is not contagious.
How common it is
PSC is uncommon. It is seen more in men, and often begins in adulthood. A large share of people with PSC also have inflammatory bowel disease, most often ulcerative colitis, so people with PSC are usually offered a colonoscopy.
How it is diagnosed
Blood tests often show raised "cholestatic" liver enzymes (such as ALP). The key test is MRCP, a special MRI of the bile ducts, which shows the beaded, narrowed pattern. Sometimes ERCP (a camera test through the mouth to look at the ducts) or a liver biopsy is needed. Doctors also check for inflammatory bowel disease and for other causes of bile duct disease, and assess scarring with FibroScan or blood scores.
Lifestyle and daily habits
Regular care and a healthy lifestyle protect your liver and bones.
• Attend all scheduled blood tests, scans and colonoscopies
• Avoid alcohol and do not smoke
• Stay active and keep a healthy weight; weight-bearing exercise helps bone strength
• Get vaccinated against hepatitis A and B as advised
• Report fevers promptly, because duct infections need quick treatment
Diet
There is no special diet for PSC. Good nutrition keeps you strong.
• Eat a balanced diet with enough calcium and vitamin D for your bones
• Ask whether you need fat-soluble vitamins (A, D, E, K) if bile flow is poor
• Reduce salt if you have fluid build-up
• Avoid herbal remedies and supplements unless your doctor approves
Medicines
There is no medicine proven to cure PSC. Medicines manage symptoms and related conditions. Your doctor decides.
• Ursodeoxycholic acid (UDCA) is used in some patients; its benefit is uncertain, so doctors decide case by case
• Itch can be treated with special medicines; do not use over-the-counter creams alone without advice
• Antibiotics are used promptly for bile duct infections
• Treat any inflammatory bowel disease as advised by your gastroenterologist
Procedures and surgery
Procedures are used for narrowing, infection and surveillance.
• ERCP to stretch (dilate) or stent a tight stricture and take samples if cancer is suspected
• Colonoscopy at diagnosis and then at regular intervals
• Regular MRI or ultrasound to watch for bile duct, gallbladder and liver cancers
• Bone density scan
• Liver transplant for advanced disease or repeated cholangitis
Outlook
PSC usually progresses slowly over many years, but it varies a great deal. No medicine has yet been proven to stop it. Cirrhosis may develop, and people with PSC have a higher risk of cancer of the bile ducts, gallbladder, liver and colon, so regular surveillance is important. Liver transplant is an effective option for advanced disease.
Questions to ask your doctor
• Do I also have inflammatory bowel disease, and how often should I have a colonoscopy?
• How much scarring do I have?
• What surveillance scans do I need?
• How can I manage the itching and tiredness?
• When should I be considered for transplant assessment?
Source and review
This guide comes from the Saudi Gastroenterology Association (SGA) patient library, prepared by the Approved for publication by SGA; individual clinician review is ongoing. Last reviewed: 2026-04-24. It is for education and does not replace your doctor's advice.
Frequently Asked Questions
What is Primary Sclerosing Cholangitis (PSC)?
How is Primary Sclerosing Cholangitis (PSC) diagnosed?
What is the outlook for Primary Sclerosing Cholangitis (PSC)?
When should I see a doctor about Primary Sclerosing Cholangitis (PSC)?
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