Living with the symptoms of primary biliary cholangitisa (PBC) isn’t easy—but there is help available.
Symptoms of PBC can be hard to manage, but it can be helpful to gather information about what to expect and possible treatments to discuss with your healthcare team.
Common symptoms of PBC include, but are not limited to:
Itching, clinically known as pruritus
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 the liver gets worse
- Experiencing itching and fatigue does not mean that your medicine is not working
a Formerly known as primary biliary cirrhosis.
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.
- There are many treatments for pruritus, so speak with your healthcare provider to see if any are right for you
- Don’t stop taking medicine your doctor has prescribed for your disease—even if the medicine does not make your symptoms better, it may be helping to slow the destruction of your bile ducts
It can be helpful for your healthcare team to see when and how severe your symptoms are between visits.
Use the PBC Living app to help you keep track of your symptoms.
Pruritus (itching) can be a challenging symptom, but treatments can help.
Although there are many possible treatments for pruritus, nearly half of people who experience the symptom 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 sander...it was that bad just to sand the skin off my feet.”
— Wendy, England
Did you know there are medical guidelines for pruritus treatments?
Download 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.
- It is important to speak with your healthcare team about all of your symptoms so that they can help you get relief
- In PBC, fatigue may sometimes start after a surgery
- Treatment and certain techniques are available that may help you cope with the fatigue you may feel
“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
“When they say ‘fatigue,’ it’s just something you really can’t explain to people. It’s like you can go grocery and come back—something that’s simple—and come back and feel like I can’t do anything else anymore. I 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
Take a look at some of the ways healthcare providers address fatigue in people who have PBC.
Download this fact sheet to help you talk with your healthcare team about what might work for you.
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.
You can take action.
The experience of PBC is different for each person. At MyPBCCoach.com, you can get a personalized conversation guide to help you make a management plan with your healthcare team.