Primary Sclerosing Cholangitis (PSC) is a rare, chronic liver disease that causes inflammation and scarring of the bile ducts. PSC can take years to correctly identify due to symptoms which are common with other conditions.
It’s important to always discuss new or worsening symptoms with your doctor. In some cases, medications might be prescribed to alleviate symptoms. Do not take any medications, including herbal remedies, without discussing it first with your hepatologist or PSC health care provider.
Some individuals affected by PSC may encounter few, if any, symptoms. PSC is often diagnosed through blood tests before symptoms occur. However, many individuals experience symptoms such as:
- Fatigue – Sometimes described as feeling run down or unable to get adequate sleep, fatigue is the most common symptom cited by PSC patients. Fatigue can also be described as flu-like exhaustion that does not go away with sleep or rest.
- Pain – Felt in the middle or right side of the abdomen or on the right side towards the rib cage. The pain can also extend to the shoulder blade area. It can be of differing severity and can last for a varying amount of time. This can often be referred to as right upper-quadrant (RUQ) pain. Some people experience joint pain or other general pain.
- Intense Itching (Pruritus) – Can occur anywhere. Pruritus is commonly experienced on the soles of feet or palms of hands and can also occur in the eyes and mouth.
- Jaundice – The development of a yellow tint of the skin and eyes. Other symptoms can be dark urine or pale or clay-coloured stools. Jaundice is caused by a buildup of too much bilirubin which the liver cannot process. Bilirubin is a yellow substance produced by the breakdown of red blood cells and which passes through the liver to be eventually excreted from the body.
- Diarrhea or constipation
- Nausea or vomiting
- Sadness or depression – A long term period of sadness, loss of interest in normal activities or hopelessness perhaps for “no reason” that you don’t seem able to overcome through your usual means of cheering yourself up. Others may experience insomnia or anxiety.
- Chills and fever – If a person experiences chills, fever or both, it may be signs of a bacterial infection in the bile ducts often referred to as a cholangitis attack or acute cholangitis. A bacterial infection in the bile ducts is an emergency and requires immediate medical attention and treatment.
- Brain fog – Cognitive impairment, or more commonly referred to as brain fog, For PSCers with cirrhosis, this can be caused by hepatic encephalopathy (HE). HE occurs when the liver isn’t filtering toxins properly. The toxins build up in the blood stream, eventually affecting the brain. This can cause confusion, disorientation and other changes. Brain fog is also reported by people with PSC who do not have cirrhosis. Non-HE brain fog is less well understood.
If you or your caregiver notices any changes in your condition, discuss it with your hepatologist or health care provider.
PSC Symptom Assessment Survey findings
As part of the PSC Partners Patient Registry, a Symptom Assessment Survey was conducted in 2025 to identify the different symptoms experienced by those living with PSC. The chart below shows the percentage of respondents who experienced each symptom. On average, registry participants reported experiencing 5.5 out of the 11 symptoms listed.
Timing of PSC symptoms
Everyone’s PSC journey is different. Symptoms can vary by person, and the disease can progress at different rates.
In 2020, PSC Partners conducted the “Our Voices”1 research survey with 819 PSC patients to better understand the PSC patient experience. The survey included a question asking patients when their PSC symptoms start. More than half of respondents stated that their symptoms began before their PSC diagnosis.
Find out how to manage PSC symptoms at PSC Symptom Management and Treatment Options. The article provides information about the various interventions and treatment options available to help manage the symptoms of PSC.
- More information about the Our Voices survey can be found in this publication (Li M, Pai RA, Gomel R, Vyas M, Callif SC, Hatchett J, Bowlus CL, Lai JC. Patient-focused drug development in primary sclerosing cholangitis: Insights on patient priorities and involvement in clinical trials. Hepatol Commun. 2024 May 10;8(6):e0433. doi: 10.1097/HC9.0000000000000433. PMID: 38727680; PMCID: PMC11093571) and in the Voice of the Patient Report for PSC hosted on the FDA website (search for “primary sclerosing cholangitis” https://www.fda.gov/industry/prescription-drug-user-fee-amendments/condition-specific-meeting-reports-and-other-information-related-patients-experience
