Symptoms

Patients with primary sclerosing cholangitis may experience a variety of symptoms including:
Fatigue
Itching
Jaundice (yellowing of the eyes or skin) 
Pain in the upper abdomen
Sleep disruptions and night sweats
Fever and chills

Diagnosis Journey

Learn more about how people who are experiencing signs and symptoms of primary sclerosing cholangitis can be diagnosed.
When to see your doctor
Visit your doctor if you are experiencing severe, persistent itching sensations all over your body as well as chronic fatigue. If you are having these symptoms and have a history of inflammatory bowel disease, such as ulcerative colitis or Crohn's disease, it is important to make an appointment with your doctor.
Process for diagnosis
Tests used to confirm a PSC diagnosis include:
  • Magnetic Resonance Imaging (MRI): An MRI can be used to create images of the liver and bile ducts.
  • Liver function blood test: This test checks the efficiency of your liver and liver enzyme levels.
  • Endoscopic Retrograde Cholangiopancreatography (ERCP):  This is an X-ray of the bile ducts and may be used in addition to an MRI.  During an ERCP, a flexible tube is inserted down the throat and is used to inject dye into the area of connection between the bile duct and small intestine. An ERCP may also be used for diagnosis instead of an MRI, but this occurs rarely due to the risk of complications.
  • Liver Biopsy: A portion of the liver is removed and tested in a laboratory. This test is only used when the diagnosis is still uncertain after an MRI or ERCP.

If you feel that you are not receiving adequate treatment, don't be afraid to explore other physicians and specialists in order to get the care you need.

Specialists

John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link

Registered doctors

John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link

Ongoing Research and Treatment Options

Primary sclerosing cholangitis is a rare disease that requires more effective treatment options. In order to find these new treatments for PSC, further research is necessary.

Current Research Studies

Check out our featured study below. If the SPRING Study is not right for you, there are approximately 25 research studies actively recruiting participants. Search this site to find PSC research studies near you.

Featured Study

SPRING Study
If you have primary sclerosing cholangitis, you may be eligible for the SPRING study which aims to improve liver function and could offer relief to PSC-related signs and symptoms.

Treatments for Itching

  • Antibiotics: The most common antibiotic to help relieve itching in PSC is called rifampin, which is a drug used to treat tuberculosis. Rifampin has been shown to relieve itching by activating receptors in a patient's gut and liver.
  • Bile acid sequestrants: Cholestyramine is a common bile acid sequestrant that reduces high cholesterol and can improve itching in PSC.
  • Ursodeoxycholic acid: This medication can help relieve itching caused by liver disease by fighting bile acids that build up.

Treatments for Bile Duct Blockages

  • Stents: Stents are placed in the bile ducts that are blocked to keep them open.
  • Balloon dilation: A procedure to help open blockages in the bile ducts.

Surgery

In severe cases of PSC, surgery may be necessary.
  • Liver Transplant: A liver transplant is for patients who are in liver failure or have severe PSC complications. The patient’s diseased liver will be replaced with a healthy liver from a donor.

Nutrition Support

Patients with PSC may have a difficult time absorbing vitamins and nutrients that they need. Diet supplements may be necessary for patients to get the proper amount of vitamins and nutrients.

Resources

Find an online community of fellow PSC patients, caregivers, and advocates below as well as some other general resources!

PSC-Support (FB primary sclerosing cholangitis & transplant support)
A support group for patients with primary sclerosing cholangitis where they can get support from other PSC patients and share their experiences.
PSC-support Primary Sclerosing Cholangitis - Young Adults
A support group specific to young adult PSC patients who are looking for advice and a community to share their stories.
Reddit Group: r/PSC
A Reddit community for PSC patients and caregivers and those researching the condition to get information and support.
PSC Support
PSC Support is a patient organization in the UK dedicated to improving the lives of patients and families affected by PSC.
American Liver Foundation
The American Liver Foundation is a non-profit organization that promotes education, advocacy, support services, and research to help prevent, treat, and cure liver diseases.
Children's PSC Foundation
The Children's PSC Foundation is dedicated to helping patients with PSC find treatments that work for them and work on new research for PSC.
The Comical Colon
The Comical Colon website was created by Jenna Ziegler, a writer and chronic illness advocate living with ulcerative colitis, arthritis, and primary sclerosing cholangitis. On this website, Jenna writes about her own chronic illness journey and offers advice and support to others on their own chronic illness journeys..
About IBD Podcast Episode 73 - You've Got to Find the Humor in Things
This episode of the About IBD Podcast features Jenna Ziegler, the creator of the Comical Colon website listed above. On this episode, Jenna shares her experiences with PSC and ulcerative colitis, as well as tips on how to advocate for yourself and be an empowered patient.
How to Deal When the Sh*t Gets Real Episode 39 - Invictus Life with Russell Creed
On this episode of How to Deal When the Sh*t Gets Real, Russell Creed shares his journey with primary sclerosing cholangitis, his liver transplant experience, and how he helps others find purpose and mindset.

Living with Primary Sclerosing Cholangitis (PSC) 
Visit this website created by Ben's Friends to learn more about the additional support available for PSC patients and caregivers. Ben’s Friends helps patients, caregivers, friends, and families affected by rare diseases or chronic illnesses, find a supportive place to connect with others. This website has forum discussions for various topics where people affected by PSC can find more support, as well has a crisis help line for those who are struggling.

Primary Sclerosing Cholangitis and Social Security Disability
Read about how people living with PSC can file for social security disability.

New Study Explores Unique Approach to Treat a Rare Liver Disease

Read this article about a new study that explores a different approach to treating primary sclerosing cholangitis.

Primary Sclerosing Cholangitis: Therapy with Synthetic Bile Acid Acts Directly on the Immune System

Visit this article to learn more about studies that demonstrated positive effects from administering synthetically produced bile acids and bile acid receptor agonists.

FAQs

What causes PSC?
There is no known cause, but PSC may potentially have genetic, autoimmune, and environmental origins associated with it.
How common is PSC?
Globally, one in every 10,000 people is diagnosed with primary sclerosing cholangitis.
Are there risk factors for PSC?
The risk factors of PSC include being between the ages of 30-40 and having IBD.
How common is it for PSC patients to also have IBD?
About 60-70% of patients with PSC also have IBD.
How can patients with PSC find support?
Check out the Resources section to learn more.
Is there a gender discrepancy associated with PSC?
PSC is more common in men than women.
When does a liver transplant become necessary for patients with PSC?
PSC patients will continue to experience a gradual loss of their liver function over time. If liver failure in patients with PSC becomes severe, a liver transplant may be necessary.
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