PBC SYMPTOMS
An invisible condition
Symptoms vary from person to person, but common symptoms include:
Fatigue
“It’s severe exhaustion that I can’t explain.”
Severe itching
“There is nothing that helps.”
Body pain
“It’s an ache that no one else can see.”
Brain fog
“My forgetfulness leads me to feeling angry and scared.”
These are not the only symptoms of primary biliary cholangitis (PBC). Beyond physical and mental symptoms, many people also experience an emotional burden of the disease.
It’s important to understand that PBC symptoms:
- Are unique to each person
- Can change over time
- Do not necessarily mean disease progression (or worsening)
Did You Know?
Up to 78%
of people with PBC experience fatigue, making it the most common PBC symptom.
Did You Know?
Did You Know?
Up to 70% of people have itching that is sometimes severe
Some symptoms of PBC go beyond discomfort. They can meaningfully affect your day-to-day routine and sense of well-being. These challenges can feel intense or draining, but remember that you’re not facing them alone. Many others with PBC share similar experiences and understand what you’re going through.
Ways to keep track of symptoms
There are tools that can help you keep track of how PBC is affecting your daily life, including simple approaches like keeping a symptom diary or completing a short self-assessment. Doctors and researchers also use more formal tools, such as the PBC-40, to assess and monitor symptoms in clinical trials and other settings.
Looking at the PBC-40 questions ahead of time can help you notice patterns in your own symptoms and feel more prepared if your doctor uses this assessment during a visit. Whether you use a diary, a self-assessment, or a review of the PBC-40 questions, keeping a record of your experiences can be an invaluable part of discussing how you’re feeling and what may be changing over time.
A 40-question survey that helps measure how PBC affects different symptom areas, including fatigue, itch, brain fog, emotional impact, and social impact.
Selected questions to assess your fatigue
In the last 4 weeks…
- Have you felt so tired that you had to force yourself to get out of bed?
- Have you needed to sleep during the day because of fatigue?
- Has fatigue interfered with your daily routine?
- Have you felt worn out, even after resting?
- Have you felt so tired that it was hard to do the things you needed to do?
- Have you gone to bed earlier than usual because of fatigue?
- Has fatigue come on suddenly?
- Have you felt like PBC drained your energy?
If PBC-related fatigue is limiting your life, speak up.
Jackie, living with PBC
Talking openly with your doctor about fatigue and other symptoms is an important part of managing PBC
Try our Doctor Discussion Guide to make the most of your next conversation.
Learn about treatment response and monitoring disease progression
