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Living with Primary sclerosing cholangitis

A condition in which the bile ducts become inflamed and scarred, which can lead to liver problems; often found with inflammatory bowel disease.

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Understanding Primary sclerosing cholangitis

Primary sclerosing cholangitis is a condition that affects the bile ducts, the tubes that carry bile from the liver to the gallbladder and intestine.

Inflammation scars and narrows the ducts, so bile builds up in the liver. It is usually diagnosed around age 40 and affects men twice as often as women. Many people have no symptoms at first and routine blood tests show liver problems. Over time it can lead to liver scarring (cirrhosis). Fat digestion problems can cause weight loss, low fat-soluble vitamins and thin bones. It is often found with inflammatory bowel disease.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the earliest signs:

  • Extreme tiredness (fatigue)
  • Abdominal discomfort
  • Severe itching
  • Yellowing of the skin and eyes (jaundice)
  • Enlarged spleen
  • Weight loss

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include digestive system specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Autoimmune Association, PSC Partners Seeking a Cure and Global Autoimmune Institute may keep lists of experts for this condition.

Care & treatment

Care team
Digestive system specialists (gastroenterologists)
Expert care
Expert lists: Autoimmune Association, PSC Partners Seeking a Cure, Global Autoimmune Institute
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with Autoimmune Association and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Should I be checked for inflammatory bowel disease?
How often should my liver and bile ducts be monitored?
How can bone health and vitamin levels be protected?

Quick facts

Symptoms usually starta variety of ages

GARD says the reason it develops is unknown. It is linked to inflammation that scars the bile ducts, and often occurs with inflammatory bowel disease.

Gastrointestinal

Also known as: psc; psc - primary sclerosing cholangitis

Patient organizations

Source: NIH GARD · Primary sclerosing cholangitisGARD ID 1280 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

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Explore research for Primary sclerosing cholangitis

Explore actively recruiting Primary sclerosing cholangitis studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Primary sclerosing cholangitis with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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