Questions to Ask Your Doctor When You Have Primary Biliary Cholangitis

Primary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you may feel a lot of uncertainty. Your healthcare provider should be able to help address this uncertainty.^1,2

Ask your doctor all of your questions about PBC. It can be helpful to prepare a list of questions before appointments so you do not forget anything. Bringing a family member or friend to doctor’s appointments also can help you remember important information.^1-3

Questions about the diagnosis process

Even if you are still waiting on a formal diagnosis of PBC, you may have questions about the process. Consider asking questions like:^1-3

• What tests will you use for a diagnosis?
• What will these tests tell us?
• How do I prepare for the tests?
• How long do I need to wait for results?
• What happens during these tests?

Questions about treatment

There is no cure for PBC. But there are treatments that can slow or prevent the disease from progressing. Questions you can ask about your treatment might include:^1-3

• What treatment do you recommend?
• Will this treatment slow disease progression?
• Can you give me specific instructions for taking a certain drug? For example, what time of day should I take my medicine? Should medicine be taken before or after eating?
• What side effects should I expect from any drugs?
• Is there anything I can do to relieve symptoms like itching and fatigue?

Questions about disease progression

After a PBC diagnosis, your doctor will perform tests on your liver. These might include a biopsy or imaging tests. The goal of these tests is to see how far liver damage has progressed. Questions you may want to ask your doctor about PBC progression include:^1-3

• How severe is my liver damage?
• What can we do to treat the liver damage?
• How will you monitor my liver damage?
• Is there a risk of developing severe liver scarring (cirrhosis)?

Questions about complications

As PBC progresses, it may lead to other health problems, called complications. These might include trouble digesting fat or high blood pressure in veins near the liver (portal hypertension). Managing these complications is an important part of your treatment. Questions you might have about PBC complications include:^1-3

• What complications am I at risk for?
• Is there anything I can do to prevent complications?
• How should I monitor for possible complications?
• What are the symptoms of possible complications?
• What are the treatment options for these complications?

Questions about lifestyle changes

If you have PBC, maintaining a healthy lifestyle may help you feel better and manage your symptoms. Questions you can ask your doctor about lifestyle changes include:^1-3

• Should I change my diet?
• Are there any supplements I should take?
• Is exercise a good idea? What types of exercise do you recommend?
• Can you give me resources to help me quit smoking? (If you smoke.)
• Should I avoid certain activities, like drinking alcohol?
• Are there any other lifestyle changes I should make?

These are not all the questions you might have. And some of these questions may not apply to you. But finding out as much as you can about PBC will help you adjust to living with the condition.^1-3