A guide to uncommon or rare symptoms of PBC

Photo shows shoulder joint pain
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Beyond fatigue and itchy skin, PBC may have other symptoms that signal a change in the disease and its progression.

In most cases, primary biliary cholangitis (PBC) is characterized by fatigue and itchiness of the skin. These two most common symptoms can severely affect daily life, with the consequences of extreme fatigue, including poor concentration, low mood, lack of energy and impaired decision-making.

The effects of constant itchiness of the skin can lead to anxiety and depression. But other less common symptoms have also been reported. They are usually associated with disease progression and need to be investigated.

Who is most at risk for PBC?

Formerly known as primary biliary cirrhosis, PBC is a rare autoimmune liver disease that mainly affects middle-aged women.

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.

There is no cure, and treatment focuses on slowing disease progression and managing the symptom burden through medication, diet and lifestyle changes. The cause of PBC has not been identified but genetic and environmental factors — including smoking and air pollution — are thought to play a role.

Less common symptoms of PBC

The symptoms of PBC and their intensity can vary from person to person, and they change and become more diverse as the disease progresses.

Read more about PBC signs and symptoms

In addition to fatigue and itchy skin, other symptoms may include the following:

  • Joint and muscle pain.
  • Mild cognitive impairment.
  • Bone fractures and osteoporosis.
  • Enlarged veins.
  • Jaundice as liver function declines.
  • Xanthelasmas: small white or yellow bumps around the eyes.
  • Unintentional weight loss as the body has trouble absorbing fat and vitamins.
  • Ascites: a distended belly due to the buildup of fluid.
  • Hepatomegaly or enlarged liver.
  • Splenomegaly or enlarged spleen.
  • Diarrhea, as the body cannot digest food properly.

If you notice any of these symptoms, report them to your health care team. Their presence may signal a deterioration in your condition and may require further investigation and potentially a change in your treatment.

Managing PBC symptoms

The symptom burden of PBC can be alleviated to some degree by making changes to your diet (eat a low salt diet with less alcohol and caffeine) and lifestyle (avoid stress, exercise regularly, practice meditation, quit smoking, maintain good skin and dental hygiene).

To help support quality of life, medication such as antihistamines and ursodeoxycholic acid (UDCA) is also prescribed to help manage symptoms.