Signs and Symptoms of Primary Biliary Cholangitis

Symptoms of primary biliary cholangitis (PBC) vary. Some people have no symptoms for many years. Signs of PBC can be found in bloodwork.¹

This article covers common signs and symptoms of PBC. It will also explain how to manage symptoms. You should talk to your doctor about your specific situation.

What are common symptoms of primary biliary cholangitis?

About 60 percent of people with PBC do not have symptoms when they are diagnosed. Symptoms can develop 5 to 20 years after diagnosis.^1,2

The earliest and most common symptoms of PBC are:^1,2

• Fatigue
• Itchiness

These symptoms affect everyone differently. They can range from mild to severe. Fatigue is a major factor in overall quality of life. More severe symptoms do not mean you have a more advanced stage.^1,3

Other symptoms are possible. Symptoms that can show up later can include:^1,2

• Pain in the upper right abdomen
• Memory and concentration problems
• Bone, muscle, or joint pain
• Weight loss, skin yellowing (jaundice), and swelling caused by liver scarring
• Fatty deposits that appear as yellow bumps under the skin (xanthomas)
• Darkening of skin (hyperpigmentation)
• Dry eyes and mouth caused by Sjogren’s disease, which is another autoimmune condition common among people with PBC
• Symptoms of other conditions related to PBC

What are the signs of primary biliary cholangitis?

Most people with PBC are diagnosed during routine bloodwork or lab tests. Your doctor may notice abnormal levels of certain chemicals. Common signs of PBC from bloodwork include:^1,4

• Antimitochondrial antibodies (AMA) – About 95 percent of people with PBC have elevated AMA levels in their blood. They rarely occur in people without PBC.
• Antinuclear antibodies (ANA) – About 70 percent of people with PBC have an elevated ANA level.
• Antismooth muscle antibody (ASMA) – Some people with PBC may have an overlap syndrome with autoimmune hepatitis, which usually has elevated ASMA levels.
• High liver enzymes – The most common lab abnormality in people with PBC is an elevated alkaline phosphatase, one of the liver enzymes checked on routine liver labs.
• High cholesterol – Half of people with PBC have high cholesterol.

If test results are positive, your doctor may look for other signs. They can perform a physical exam of your skin and liver. Images from ultrasound or other tests can show signs of bile duct damage. Some patients may need a liver biopsy to confirm the diagnosis.⁴

How can I tell if my symptoms are getting worse?

Monitoring your symptoms is important. It can help doctors treat symptoms. You can also see how PBC affects your quality of life.

Keeping track of PBC symptoms can be hard. Fatigue and itchiness can vary over time. Talk to your doctor about how to tell if they are getting worse. They may suggest questionnaires to measure symptoms. These include:⁵

• PBC-40 scale – a 40-question survey that helps measure the impact of PBC symptoms
• 5-D itch scale – a 5-question survey to measure itchiness caused by PBC

What are the signs that PBC is progressing?

Your symptoms may get worse over time. But worsening symptoms may not mean that PBC is progressing. The most reliable signs of PBC progression are blood chemical levels. These include:^3,4

• Bilirubin – a chemical that passes through the liver and gives bile its yellow color
• Alkaline phosphatase (ALP) – an enzyme in the liver that indicates how well the liver is working

Higher levels of ALP and bilirubin may mean PBC is more advanced. You may see a doctor every few months to get bloodwork. You should talk to your doctor about what your results mean.^3,4

What treatments can improve symptoms?

Talk to your doctor about managing your symptoms. They may suggest lifestyle changes and medicines to treat symptoms. There are medications that are used to treat PBC that may also help with itchiness and fatigue. There are also other treatments that will not treat PBC itself, but they can help make you more comfortable.¹

These include:¹

• A healthy diet and exercise can help improve tiredness
• Managing other conditions that cause tiredness
• Antihistamines or other medicines to reduce itching
• Supplements to prevent or manage other conditions
• Artificial tears, saliva substitutes, or other treatments for dry eyes and mouth