Primary biliary cholangitis (PBC) produces a wide range of symptoms that differ from person to person and usually develop over time, as this liver condition progresses.

PBC — formerly known as primary biliary cirrhosis — is a chronic (long-term) liver disease that slowly destroys the bile ducts in the liver. Bile ducts are canals that connect your liver and gallbladder to your small intestine, which is part of your digestive system. Long-term inflammation from PBC leads to scar tissue and blocks off the bile ducts. Eventually, scar tissue builds up — a process called fibrosis — and reduces liver function, a condition known as cirrhosis.

Some symptoms are caused by complications of PBC. However, about 60 percent of people don’t have any symptoms of PBC when they receive the diagnosis. In those cases, PBC may be diagnosed through routine blood tests.

The most common symptoms of PBC are fatigue and itchy skin, but several other symptoms also can occur during the course of your disease. Continue reading to learn more about 10 types of PBC symptoms.

1. Fatigue

More than half of people with PBC experience fatigue that makes it hard to carry out normal activities. The extreme tiredness may not get better even if you get enough rest and sleep.

Fatigue usually isn’t related to the severity of PBC. One in 5 people with PBC experience severe fatigue that affects their quality of life, according to a 2022 study in the World Journal of Hepatology.

Symptoms of fatigue in people with PBC may include:

• Lack of energy
• Exhaustion
• Muscle weakness
• Memory problems
• Trouble concentrating
• Lack of motivation

Fatigue in PBC may not improve even when you take medication to slow the progression of the disease, such as ursodiol (also known as ursodeoxycholic acid, or UDCA) or obeticholic acid (Ocaliva). Researchers and doctors believe that the PBC-related fatigue stems from sleep problems.

2. Itchy Skin

Itchy skin — also known as pruritus — is common in people living with PBC. In fact, 2 out of 3 people with PBC experience pruritus at some point. Itching that lasts longer than six weeks is classified as chronic pruritus.

If you have PBC, you may develop pruritus at any point. Some people even experience itching before they’re diagnosed. In some cases, the itchiness improves in the later stages of PBC.

Pruritus usually affects your arms and legs, especially the palms of your hands and soles of your feet, and is most intense later in the day and at night. Itchiness can also be more severe during times of hormonal change, such as during menstruation or pregnancy or while taking hormone replacement therapy.

3. Dry Eyes and Mouth

Between 47 percent and 73 percent of people with PBC experience dry eyes and mouth. These symptoms arise from another autoimmune disease called Sjӧgren’s syndrome, a common condition diagnosed in people with PBC.

Sjӧgren’s syndrome causes inflammation in the glands that secrete moisture, leading to dry eyes and mouth. A 2022 systematic review in the journal Annals of Hepatology, which pooled the results of 17 studies, estimated that 35 percent of people with PBC also have Sjögren’s. On the other hand, up to 1 percent of the general population have Sjögren’s syndrome.

Dry eyes may burn or itch or feel like there’s sand in them. If you have a dry mouth, you may have difficulty speaking or swallowing.

4. Fluid Buildup

A complication of PBC called portal hypertension can cause fluid to collect in different parts of your body. Portal hypertension can develop when inflammation damages the liver tissue and causes fibrosis. The scar tissue can block or slow the blood flow in the liver, causing increased blood pressure in the portal vein, the large blood vessel that delivers blood to your liver.

If the pressure in the portal vein is high enough, it can cause fluid to leak out into other parts of your body, including your lower body or your abdomen (stomach).

Excess fluid in your legs, ankles, or feet is called edema. If you have edema, you may notice other symptoms, such as:

• Swollen feet or ankles
• Skin that looks stretched or shiny
• Pitting (skin remaining dimpled after being pressed for a few seconds)
• A feeling of heaviness in your legs

Fluid buildup in your abdomen is called ascites. If you have ascites, you may notice that your belly is larger, and you may look and feel bloated. The excess fluid can also cause rapid weight gain.

5. Stomach Pain

Abdominal pain is common in people with PBC. Most people who have pain with liver disease describe it as affecting their abdomen. Your liver is located in the upper right part of your abdomen. Pain in this area could be directly related to your liver.

Pain in the upper left part of your abdomen may be caused by an enlarged spleen, known as splenomegaly. Your spleen is a part of your immune system that helps filter your blood and makes white blood cells. Portal hypertension caused by PBC can cause splenomegaly.

Other complications of portal hypertension that can cause stomach pain include ascites and varices. Varices are enlarged veins in your gastrointestinal tract, such as the esophagus, stomach, or intestines.

6. Bone and Joint Problems

People with PBC have an increased risk of osteoporosis, a disease that weakens your bones. From 20 percent to 45 percent of people with PBC develop osteoporosis. It’s more common to develop this bone condition in the late stages of PBC, but it also can happen earlier.

Although anyone can develop osteoporosis, people with PBC are four times as likely to have it as those without PBC. PBC interferes with the ability to absorb fat-soluble vitamins, such as vitamins A, D, E, and K. Vitamin D helps you absorb calcium and protects against osteoporosis.

If you have osteoporosis, you’re more likely to fall and break a bone. Between 20 percent and 40 percent of people with PBC have a bone fracture in the first year after a liver transplant.

Many people with PBC also report pain in their bones, muscles, or joints. Joint pain may also be associated with Sjӧgren’s syndrome.

7. Skin Changes

If you have PBC, you may notice changes in the color or appearance of your skin. You may develop skin symptoms such as:

• Xanthomas — Small, raised, waxy bumps that appear around the eyes or on the elbows, knees, hands, feet, or buttocks
• Hyperpigmentation — Darkening that isn’t related to sun exposure
• Jaundice — Yellowish appearance of the skin and eyes caused by high levels of bilirubin, a pigment found in bile

8. High Cholesterol Levels

Between 75 percent and 95 percent of people with PBC also have high cholesterol — too much fat in your blood. High cholesterol usually doesn’t cause many symptoms, but it can lead to xanthomas.

In most people, high cholesterol raises the risk of heart attack, stroke, and other types of heart disease. However, high cholesterol levels in people with PBC aren’t linked to an increased risk of heart disease.

9. Diarrhea

In advanced PBC, you may have difficulty absorbing fats, which is called fat malabsorption. The small bile ducts between your liver and small intestine carry bile acids and digestive enzymes (a type of protein) that help your body break down and absorb fat from your diet.

When these bile ducts are damaged, you may have trouble digesting and absorbing fat. If you can’t absorb fat from the food you eat, it can cause diarrhea and greasy stools.

10. Underactive Thyroid

Hypothyroidism (an underactive thyroid) is more common in people with PBC than in the general population. Symptoms of hypothyroidism include:

• Fatigue
• Numbness in hands
• Constipation
• Weight gain
• Joint and muscle pain
• Depression
• Sensitivity to cold temperatures
• Dry skin and hair
• Slow heart rate

Be sure to check in with your doctor if you develop any new or concerning symptoms that may be related to PBC. They can guide you to the best approaches to treat your symptoms and manage PBC.

Talk With Others Who Understand

On myPBCteam, the social network for people and their loved ones living with primary biliary cholangitis, members come together to ask questions, give advice, and share their stories with others who understand.

Are you living with PBC? Do you have more questions about the symptoms of PBC? Share your experience in the comments below, or start a conversation by posting on your Activities page.