Living with the symptoms of PBC isn’t easy—but help is available.

Symptoms of primary biliary cholangitis (PBC) can be hard to manage. It may be helpful to know what to expect and learn about possible ways to manage them. Discuss your symptoms of PBC and what you may be able to do about them with your healthcare team.

The essential PBC glossary

As you do your research on PBC, you may come across a lot of words that are new to you. We’ve created a glossary of common terms to help you in your understanding of this disease.

Learn key PBC terms

Common symptoms of PBC include, but are not limited to:

  • Itching, clinically known as pruritus
  • Fatigue (tiredness)
  • Dry eyes and mouth
  • Trouble remembering and concentrating

How much itching or fatigue you feel is not related to how far the disease has progressed or how well your treatment is working.

  • In fact, symptoms may even get better as your liver becomes more damaged
  • Experiencing itching and fatigue does not mean that your medicine is not working

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Track your symptoms and let your healthcare team know if you need help managing them.

Tracking your symptoms can be helpful because you can show your healthcare team how often and how badly your symptoms impact your life. The PBC Living® app for your smartphone is a great all-in-one tracking tool to help you review your symptoms with your doctor. Don’t have a smartphone? You can also keep a journal. You can also figure out what works best for treating symptoms.

  • There are many treatments for pruritus, so speak with your healthcare provider to see if any may be right for you
  • Don’t stop taking medicine your doctor has prescribed for PBC. Even if the medicine does not make your symptoms better, it may be helping to slow damage to your bile ducts

Use the PBC Living® app to help keep track of your symptoms.

Download the PBC Living app

Pruritus (itching) can be a challenging symptom, but treatments are available to help.

Although there are many possible treatments for pruritus, nearly half of people who experience itching may not seek help from a healthcare provider.

  • Itching can happen anywhere on the body
  • Itchy palms and feet may be brushed off as seasonal
  • For some people, itching may become worse at night
The itchy feet were so bad that...I ended up buying a was that bad, just to sand the skin off my feet.” — Wendy, England

Managing itching caused by PBC

In this video, Dr. Jennifer Pate, Chief of Psychiatry at Baylor St. Luke’s Medical Center, provides some everyday tips for managing pruritus.

Use this summary of treatment options and discuss them with your healthcare team to see if any of the options listed might help you.

Download fact sheet

Severe fatigue (tiredness) is another common symptom of PBC.

Fatigue related to PBC can affect different people in different ways.

  • It is important to speak with your healthcare team about all of your symptoms so that they can help you get relief
  • With PBC, fatigue may sometimes start after a surgery
  • Treatment and certain techniques may help you cope with the fatigue you may feel
When they say ‘fatigue,’ it’s just something you really can’t explain to people. It’s like you can go grocery shopping—something that’s simple—and come back and feel like I can’t do anything else anymore. Literally, I have to sit down. I cannot function anymore. I can’t do anything else. It’s an incredible...It’s like a feeling like it’s not just being tired—it’s like you feel I could just fall asleep standing up, like I can’t do this anymore.” — Nishele, Minnesota
When you look back, when you get to reading up on it and looking back, I had fatigue something terrible back in 2000. I would be sitting at a dining room table and I would say, whether it was a bunch of people or a few people, holiday, whatever, I would say, ‘Okay, I’m going to have to put my head down and take a nap. I am so tired.’” — Diana, Arizona

Fighting fatigue caused by PBC

In this video, Dr. Jennifer Pate explains how fatigue affects some people living with PBC and provides some tips to help manage it.

Use this fact sheet to discuss with your healthcare team ways to address fatigue that might work for you.

Download fact sheet

The symptoms of PBC can be difficult to manage and may cause stress.

PBC may increase the risk of depression, especially if your symptoms are not diagnosed and treated. Cognitive dysfunction, which is described by patients as brain fog, is also common in PBC patients. It is important to speak with your healthcare team about how your symptoms affect you so they can help you manage those symptoms. Some people find it helpful to keep a journal to show their healthcare team how symptoms are worse or better at certain times of the day or during certain seasons.

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All participating parties, including patients, physicians, and experts, were compensated by ICPT.


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