Life with PBC

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Primary biliary cholangitis (PBC) is a chronic and progressive liver disease. This means it can get worse over time and it does not go away on its own, but it is manageable. Treating early can even potentially slow down disease progression.

UDCA (ursodeoxycholic acid) is a common first step for many PBC patients. But for many, it may not be enough. Speak with your healthcare provider about your treatment response. There may be additional treatment options that can help.

You may still experience PBC symptoms while on treatment—this is not related to how far your PBC has progressed or how well your treatment is working.

Learn more about treatment

Make sure you keep up with your routine tests

Routine monitoring of liver biochemical markers (biomarkers) and your “liver stiffness” (fibrosis) can help you and your healthcare provider track your PBC progression. You should be getting liver panel tests done every 3 to 6 months and liver ultrasounds every 12 to 24 months (depending on your response to treatment).

In people with high-risk PBC, as defined by your healthcare provider, a liver ultrasound may be done 6 months after starting UDCA to check your response.

Learn more about monitoring progression

Here are some helpful tips for staying on track:

Set reminders on your phone or calendar for blood tests and ultrasounds
Schedule your next appointment right away after each test
Track your test results using the PBC Living® app or take notes with a journal
Talk to your healthcare provider about other medications if your biomarker levels are still high

The PBC Living® app can help you track and monitor your PBC

PBC progression can lead to other health issues

The sooner you start a treatment, the better you may be able to prevent other problems that can develop alongside PBC progression, such as:

Swelling in the stomach or fluid retention, called ascites
Bleeding in the esophagus, stomach, or intestines, called varices, caused by an increase in pressure (portal hypertension)
Hepatocellular carcinoma, a kind of liver cancer

Aim to make good choices and live the healthiest, happiest life you can.
—Debbie, living with PBC

Hear from others like you

Living successfully with PBC: A chat with the PBC collaborative

Host Ann Moore and guests Dr. Jennifer Pate, Cathy Mumford, and Laurie discuss what it means to live successfully with PBC.

Play Living Successfully with PBC

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You’re not alone in this journey

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