ABOUT PBC
What is PBC?
Primary biliary cholangitis (PBC) is a rare autoimmune disease in which the body’s immune system attacks healthy cells in the liver by mistake. People with PBC experience liver inflammation and buildup of toxins, such as bile acids, causing liver damage and reduced liver function.
If left untreated, PBC can lead to liver complications, resulting in liver transplant or death. However, there are treatment options available to you.
Having a better understanding of PBC and discussing your treatment plan with your doctor can help manage disease progression.
What causes PBC?
Genetics and environmental triggers can increase the risk of developing PBC, but ultimately the cause is unknown. It’s important for you to know that your diagnosis was not caused by anything you did.
Did You Know?
PBC is:
Multifactorial (made up of genetic and environmental factors). While a cause is not fully understood, it is treatable
PBC is NOT:
Alcohol related
PBC isn’t my fault—this is just the way my liver works.
KATHY, LIVING WITH PBC
Understanding PBC starts with understanding your lab levels
Liver markers your doctor will test:
Alkaline phosphatase (ALP)
A type of protein, called an enzyme, that is found in the liver and other parts of the body
Bilirubin
A substance that is made when red blood cells are broken down; it passes through the liver to be removed from the body
Elevated (higher) ALP and bilirubin levels may mean:
Liver damage or disease (such as PBC)
PBC treatment isn’t working well enough
Disease progression
Because PBC affects the liver gradually and symptoms can change over time, doctors often use blood tests to understand how the liver is functioning. These tests can help show whether PBC is being well managed or if adjustments to treatment may be needed. Your doctor may review your liver test levels at regular appointments to look for patterns or changes that offer insight into your overall liver health.
Know your numbers
You can monitor your levels and see how they compare to your last test result. Refer to the scale below to see a range of normal to elevated ALP and bilirubin levels.
aNormal values may vary based on lab used.
When discussing these levels with your doctor, you may hear the term “upper limit of normal,” or ULN. The ULN is the high end of a normal range for a lab result. In context of PBC, a high ALP level is usually defined as being at least 1.5 to 2 times the ULN.
Did You Know?
Did You Know?
The latest PBC guidance recommends getting lab tests done every 3-6 months.
If you would like to review your results with your doctor, ask to schedule an appointment.
Learning about PBC is an important first step in navigating your care
Read the patient brochure for a helpful overview of the condition and commonly discussed topics.
