You’ve been diagnosed with PSC.
You’re not alone in this journey.
Let’s navigate this together.
Tips for a Successful
Doctor’s Visit
Communicating with your doctor can help you feel more comfortable and build a good working relationship with your medical team. Most people’s questions do not end after diagnosis. Please remember, there is no such thing as a silly question. The doctors will likely have an answer for you or may research the answer.
Bring a Family Member or Friend
Many people find bringing someone with them to medical appointments helpful. Your family member or friend will be another set of ears when your doctor relays important information. Your medical buddy can also take notes, which are helpful to review after you get home.
Be Prepared
Write your questions down ahead of time. If you have many questions, try to write the most important ones at the top of the list. It may help your doctor if you ask them questions at the beginning of your visit.
Take Your Time
Try not to be rushed during your visit. If time doesn’t allow you to finish all of your questions, you may want to ask for an earlier appointment or request that the doctor get back to you by phone or email.
Keep an Updated List
Type or write a list of your medical conditions, dates of diagnosis, medications (dosage and frequency), and allergies. Make copies and keep this list in accessible places, including your purse or wallet and at home. Update the list when your medications change. This list is a priceless tool when visiting both your physician’s office and the hospital. It reduces the stress for everyone involved in your care.
Common Questions
The exact cause of PSC is not known, but it is believed to be a combination of environmental factors and genetics. One hypothesis is that an abnormal response to a bacterial or viral infection causes changes in the immune system that result in inflammation and scarring in the bile ducts. PSC is not contagious; it cannot be passed from one individual to another.
PSC currently has no cure, so treatment focuses on disease management and complication prevention.
What you should expect to hear:
• Monitoring strategy (labs, imaging, MRCP/ERCP)
• Management of symptoms (itching, fatigue, infections)
• Treatment of complications (bile duct strictures, cholangitis)
• Consideration of clinical trials
• Discussion of liver transplant as a future pathway (if disease progresses)
High-value insight: Ask whether they are tracking emerging therapies or trial eligibility
PSC can affect anyone at any age. About 1 in 10,000 people will develop PSC. IBD is associated with PSC: over 75% of PSC patients have IBD, and about 5% of IBD patients have PSC. About 60% to 70% of PSC patients are male. It is typically diagnosed between ages of 30 and 60, and is rarer in children and teens.
PSC is typically diagnosed after abnormal blood tests of liver functioning or PSC-related symptoms (e.g., fatigue, itching, jaundice) suggest a need for follow up. Imaging via MRCP, a specialized MRI of the abdomen, is used to look for strictures in the bile ducts to confirm PSC. If strictures aren’t visible, a diagnosis of small duct PSC may be made based on other evidence. Occasionally, ERCP and/or liver biopsy are also needed, particularly when autoimmune hepatitis (AIH) is also suspected. There isn’t a single blood test that can diagnose PSC. The whole medical picture, including your medical history, lab results, symptoms, and imaging are needed to piece things together. If you ever feel unsure about your diagnosis, it’s okay to ask for a referral to a specialist or a center with experience in PSC. Getting that extra expertise can help give you clarity and confidence in your care.
Some people have no symptoms, while others experience a range of symptoms at any stage of disease, including:
- Itching
- Fatigue and/or brain fog
- Sleep issues, including sleep disturbances and night sweats
- Abdominal discomfort or pain, particularly in or around the liver
- Jaundice (yellowing skin or eyes) in later disease stages
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