Most people with primary biliary cholangitis (PBC) experience no symptoms in early stages of the disease and are therefore unaware they have the condition. As a result, the diagnosis of PBC often takes place as a result of blood tests for unrelated medical conditions or investigations.
Your primary medical provider will refer you to a doctor who specializes in PBC.
What is PBC?
Primary biliary cholangitis (PBC) is a rare, chronic autoimmune disease that primarily affects the liver. In PBC, the body’s immune system mistakenly attacks the small bile ducts within the liver, causing inflammation and gradual destruction of these ducts. Bile, a substance essential for digesting fats and removing toxins, becomes trapped in the liver, leading to liver damage over time.
Who is at risk for PBC?
PBC is diagnosed nine times out of 10 in women who are middle-aged or older. There is no cure, and treatment focuses on slowing disease progression and preventing complications through medication and lifestyle modifications.
Learn more about PBC treatment and care
The most common symptoms are fatigue and itchy skin, but as the disease progresses and the bile ducts break down, complications may occur, causing other symptoms. These may include dry eyes and mouth, abdominal pain, darkening of the skin, jaundice, swelling of the legs and feet and poor memory. Daily life can be severely impacted by symptoms, leading to depression and self-isolation.
The benefits of specialist care
Once your clinician makes a diagnosis of PBC based on your blood results, they will refer you to a specialist for further confirmation through imaging tests and a liver biopsy.
To get the best care, people living with PBC are treated by hepatologists and gastroenterologists, with additional support from a multidisciplinary team of dietitians, nurses and psychologists.
Hepatologists are liver specialists. They are experienced in treating PBC and are well-equipped to offer the best disease treatment and management. Gastroenterologists specialize in gastrointestinal diseases, which affect the stomach, intestines, pancreas, gallbladder and liver.
As your disease progresses, these specialists will also have access to the latest research to help choose the right medication and approach for your individual situation.
Choosing the best specialist for you
Your primary health provider will likely refer you to a specialist. While their recommendations are important, you can also do your own research. Look for a specialist who has a good reputation in a location convenient to you. Patient reviews, online support groups such as PBCers.org will help you make an informed choice.
When you meet your specialist for the first time, be ready to ask questions and ask for the specialist to be clear about what you can expect from your disease. Having a doctor who listens to you is important.
You can then decide if this specialist is the best fit for you as you navigate your PBC journey.
