Primary biliary cholangitis

What is it?

The liver makes bile, a fluid that helps you digest fat and gets rid of waste.³ Bile leaves the liver through small tubes (bile ducts).³ In PBC the immune system attacks these tubes by mistake, so they slowly become inflamed and are destroyed.^3,1 Bile then builds up and damages the liver, which can lead to scarring (cirrhosis).^3,1 Why this happens is not clear.³ It used to be called primary biliary cirrhosis.¹

It is much more common in women than in men, and people find out at 60 on average.¹ The risk is higher if a parent, brother or sister has it.¹

The first signs

Many people have no symptoms when PBC is found.^2,3 Tiredness and itchy skin are common early signs.²

• extreme tiredness (fatigue);³
• itchy skin;^2,3
• dry eyes and a dry mouth;³
• aching bones and joints;³
• pain or discomfort in the upper right side of the tummy.³

How doctors find out

Many people find out by chance, from a routine blood test done for another reason.³ PBC can usually be diagnosed with blood tests alone.³ You then have an ultrasound scan to check the liver and rule out other bile duct problems.³ Sometimes a tiny piece of the liver is taken to check (biopsy), to help decide on treatment.³

Current treatment

Ursodeoxycholic acid is the main treatment and can delay liver damage in most people; if it is not working well enough, obeticholic acid may be added or used instead (elafibranor and seladelpar are other treatments).Source: NHS

Will it get worse?

PBC slowly gets worse over time, but how fast differs a lot, and it can take decades.³ Treatment can slow the liver damage.^3,4 Without treatment it may in the end lead to liver failure, which can be fatal.³ Other possible problems are weak bones (osteoporosis), too few vitamins A, D, E and K, fluid in the tummy, raised blood pressure in the veins of the gut, and a slightly higher risk of liver cancer.³

Medicines: what helps, and what to watch for

The main medicine is ursodeoxycholic acid (UDCA).⁴ It delays liver damage in most people, especially when started early, and is usually taken for life, but it does not help tiredness.⁴ After a year your doctors check whether it works.⁴ If it does not work well enough, or you cannot take it, you may be offered obeticholic acid, either with UDCA or on its own, after assessment by a specialist team. Elafibranor and seladelpar are other treatments that reduce the amount of bile acid you produce.⁴ Other medicines ease the itching, for example colestyramine, a powder you stir into juice.⁴

Good to know:

• you may need regular blood tests to monitor your liver function;⁴
• side effects can include diarrhoea, feeling or being sick, headaches, constipation or tummy pain, and obeticholic acid can cause itching;⁴

Exercise and self-care help too

• exercise when you can, but pace yourself;⁴
• for poor sleep, avoid caffeine, nicotine and alcohol late at night;⁴

A liver transplant, for some people

If the liver damage could become life-threatening, a liver transplant may be offered.⁴ Planning often starts early, because adults can wait more than 3 months for a new liver.⁴ A transplant cures the itching and other symptoms, though tiredness may stay, and most people live more than 10 years after it.⁴ You need medicines to stop your body rejecting the new liver for the rest of your life, and PBC can come back in the new liver.⁴

Eyes, teeth and everyday health

For dry eyes or a dry mouth, your GP may suggest eye drops (artificial tears) or a saliva substitute.⁴ If you are very tired, your GP may check for other causes, such as anaemia, breathing pauses in sleep (sleep apnoea) or depression.⁴

Is there a cure?

Treatment slows the liver damage and eases the symptoms.^4,3 Even a transplant does not always get rid of PBC, because it can come back in the new liver.⁴

Sources

1. NIDDK: Definition & Facts of Primary Biliary Cholangitis
2. NIDDK: Primary Biliary Cholangitis
3. NHS: Primary biliary cholangitis (PBC)
4. NHS: Primary biliary cholangitis (PBC) – Treatment

read on 2026-11-11