Patient education: Primary biliary cholangitis (The Basics)

What is primary biliary cholangitis? — 

Primary biliary cholangitis, or "PBC," is a disease that damages the liver. The liver is a big organ in the upper right side of the belly (figure 1). PBC happens when the body's infection-fighting system, called the "immune system," attacks the liver.

PBC is a serious disease. It can scar the liver and make it stop working. This can cause death. Most people who get PBC are females, but males sometimes get it.

PBC used to be called "primary biliary cirrhosis."

What are the symptoms of PBC? — 

Some people have no symptoms. When symptoms do happen, they can include:

●Feeling very tired – People with PBC are often sleepy in the daytime, even if they slept at night.

●Itching – This can be worse at night, if a person wears tight or itchy clothes, or in hot weather.

●Skin changes – These can include:

•Dry skin

•Hives – These are puffy patches that happen where a person scratches or rubs the skin.

•Dark patches on the skin

•Yellow color of the skin and whites of the eyes – This is called "jaundice."

●Pain in the joints

●Dry eyes and mouth

●Belly pain (on the upper right side of the belly)

●Losing weight without trying

●Memory and thinking problems

Is there a test for PBC? — 

Yes. The doctor or nurse will ask about your symptoms and do an exam. Tests include:

●Blood tests – This can show if PBC or another condition is causing the symptoms.

●Liver biopsy – A doctor puts a needle into your liver and takes out a small sample of tissue. Then, they look at the sample under a microscope. It helps doctors make sure that PBC is the cause of symptoms. It also tells doctors how much damage there is.

Some people have imaging tests, such as an X-ray or MRI. These create pictures of the inside of the body.

How is PBC treated? — 

Doctors treat it with medicines to slow down the liver damage.

Other treatments include:

●Vitamins – Some people with PBC do not get enough of certain vitamins from food. If you are not getting enough vitamins, your doctor can tell you which vitamins to take and how much. Do not take any vitamins or medicines without talking to your doctor or nurse first.

●Medicines to treat health problems caused by PBC, such as itching or anemia (having too few red blood cells)

●Liver transplant – If your PBC is severe, or the medicines to slow down liver damage do not work, you might need a new liver. During a transplant, a doctor does surgery to replace your damaged liver with a healthy one. After a transplant, PBC sometimes comes back again. You can take medicine to lower the chance of this happening.

Ask your doctor if you might need a liver transplant for PBC. If you do, your doctor will do more tests to make sure that you are healthy enough. Then, your doctor will put you on a waiting list for a liver transplant. Transplants are given to people with the most damaged livers first.

More on this topic

Patient education: Cirrhosis (The Basics)
Patient education: Liver biopsy (The Basics)
Patient education: Liver transplant (The Basics)
Patient education: Alkaline phosphatase test (The Basics)

Patient education: Cirrhosis (Beyond the Basics)
Patient education: Liver biopsy (Beyond the Basics)