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Tracking your PBC progression

Not a real patient.

When monitoring primary biliary cholangitis (PBC), you should be looking at your overall liver health.* Historically, guidance suggested that healthcare providers only needed to track alkaline phosphatase (ALP) and bilirubin levels to see how your PBC treatment was working, but that doesn't show the whole picture.

The longer a person’s levels of biomarkers or fibrosis are high, the more likely the risk of serious outcomes.

*Overall liver health includes (but is not limited to) disease progression, liver biochemical markers (biomarkers), fibrosis, and treatment response.

There are risk factors for progression of PBC, such as:

  • Age at diagnosis

    Risk is higher in people younger than 45 years of age

  • Race

    Risk of worse outcomes is higher in African American and Hispanic people than non-Hispanic White people

  • Biomarker levels

    Risk is higher if levels are higher than normal

  • Fibrosis stage

    Advanced fibrosis is associated with higher risk for liver transplant or death

The same way most people know their blood pressure and cholesterol numbers, I wish everyone knew their liver numbers.

—Brandi, living with PBC

Key biomarkers to monitor your PBC progression

Different biomarker levels can change at specific stages in disease progression. This is why looking at multiple biomarkers is important in managing PBC. Your healthcare team will routinely monitor and track the following:

  • Cholestasis
    (bile acid buildup)

    Cholestasis

    Alkaline phosphatase (ALP): An enzyme found in the liver and bone, which is important for breaking down proteins; elevated levels could mean liver disease

    Gamma-glutamyl transferase (GGT): This enzyme is typically the first liver enzyme to rise in the blood when bile ducts become obstructed and is used as a confirmatory test to determine if the high ALP is due to liver disease

  • Inflammation
    (cell damage)

    Inflammation

    Alanine aminotransferase (ALT): An enzyme found in the liver that helps convert proteins into energy for the liver cells. When the liver is damaged, ALT is released into the bloodstream and levels increase

    Aspartate aminotransferase (AST): An enzyme that helps the body break down amino acids; AST can be elevated as a result of damage to tissues of the body, including the liver. AST is also known as serum glutamic oxaloacetic transaminase

  • Fibrosis & cirrhosis (liver scarring & permanent liver damage)

    Fibrosis & Cirrhosis

    Albumin: A protein made in the liver that enters your bloodstream and keeps fluid from leaking out of your blood vessels into other tissues; when levels drop, may suggest cirrhosis development

    Bilirubin: A yellow bile pigment formed during the breakdown of red blood cells, it’s processed by the liver and excreted in stool; when the liver is not working properly, bile can accumulate in the blood and tissues of the body and can make the skin, and sometimes the eyes, appear yellow (jaundice)

    Platelets: These cells help your blood form clots (think scabs when you get a cut). Low platelet counts are common in people with cirrhosis

Every
3-6 months

Guidelines recommend checking liver panel tests every 3 to 6 months.

We’ve created a glossary of common terms to help you understand more about this disease.

Noninvasive imaging tests for monitoring fibrosis progression

  • Liver ultrasound,
    such as a FibroScan®
  • Computerized
    tomography (CT) scan
  • Magnetic resonance
    imaging (MRI) scan

Every
12-24 months

Fibrosis progression should be checked every 12 to 24 months depending on how you are responding to treatment. Testing may be done as early as 6 months in people with high-risk PBC, as defined by your healthcare provider.

You’re not alone in this journey

Get access to tools, resources, and other information, plus connect with other people living with PBC.

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

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