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.
Common symptoms of PBC include, but are not limited to:
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
Stay in the know
Get access to tools, resources, and educational events, plus connect with other people living with PBC.
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. You can also figure out what works best for treating your symptoms.
Use the PBC Living® app to help keep track of your symptoms.
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.
“The itchy feet were so bad that...I ended up buying a sander...it 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.
Severe fatigue (tiredness) is another common symptom of PBC.
Fatigue related to PBC can affect different people in different ways.
“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
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. 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.
All participating parties, including patients, physicians, and experts, were compensated by ICPT.