What are the symptoms of primary biliary cholangitis?
As many as half of people with PBC have no symptoms when they are diagnosed: PBC is sometimes diagnosed by chance when blood tests that have been done for other reasons show abnormalities which are due to PBC. Some of these people never develop symptoms. However, many will develop symptoms at some point as the disease progresses.
Some patients are diagnosed when their doctor examines them and notices that the liver is a little enlarged, then arranges blood tests to look for the reason why.
When symptoms do occur they tend to come on gradually, and initially they are vague and may not be noticed. They usually include the following:
- Tiredness (fatigue) occurs in about 8 out of every 10 patients. Often the earliest symptom, this can become quite a disabling tiredness and is mainly a daytime sleepiness. The reason PBC causes such severe tiredness is not clear. However, tiredness is a common condition with many possible causes (and most tiredness will not be caused by PBC).
- Itch (pruritus). This is a common symptom, seen in up to 7 out of 10 patients. It is sometimes severe and distressing, with the whole skin feeling itchy. It is usually worse at night when lying in bed. The cause of the itch is not always clear. It is most likely to be due to chemicals from the bile, which build up in the bloodstream. It can be difficult to treat adequately but often eases over time.
- Discomfort over the liver - upper right of the tummy (abdomen). This occurs in about 1 in 5 cases, probably as the liver becomes inflamed.
- Red or pink blotchiness of the hands is fairly common.
- Some people develop a feeling of sickness (nausea), bloating or diarrhoea. Stools (faeces) may be pale, bulky and difficult to flush away (this is called steatorrhoea). This is because your body's difficulty with digesting fat when you have PBC means that fat is not well absorbed and is present in the stools.
- Going off alcohol and (for smokers) cigarettes is common.
- An underactive thyroid gland (hypothyroidism) is present in about 2 out of every 10 people diagnosed with PBC. It is important to treat this, as it will otherwise make tiredness worse.
- Sjögren's syndrome (dry eyes and dry mouth) is commonly associated with PBC.
When a doctor examines you, he or she may be able to feel that your liver is enlarged.
- Early in the condition there may be few or no specific signs for the doctor to find.
- As the disease progresses, yellowing of the skin and the whites of the eyes (jaundice) develops. This is due to a build-up of a chemical in bile (bilirubin) in the bloodstream.
What are the complications of primary biliary cholangitis?
The main complication of PBC is severe liver disease, which has many possible symptoms and complications. The complications of severe liver disease include:
- Weight loss and nutritional deficiency.
- Poor healing.
- Greatly reduced immunity and susceptibility to infections.
- Easy bruising and bleeding.
- Periods may become heavier.
- Bleeding into the bowel and stomach may occur.
- Stomach ulcers are more common.
- There may be swelling of the stomach (ascites) due to fluid leak from the liver.
- Varicose veins may appear on stomach and legs.
- Severe liver failure causes confusion and drowsiness.
- Further, secondary problems develop as a consequence of liver disease, including 'thinning' of the bones (osteoporosis), hyperlipidaemia and nutritional deficiencies.
- The risk of developing osteoporosis is increased in women with PBC. See separate leaflet called Osteoporosis for more details.
- Problems with the kidneys and pancreas can occur secondarily to problems with the liver.
- Liver cancer is a very uncommon complication of PBC.
Further reading and references
EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis; European Association for the Study of the Liver (2017)
Management of cholestatic liver diseases; European Association for the Study of the Liver (June 2009)
I J Beckingham and S D Ryder; ABC of diseases of liver, pancreas, and biliary system: Investigation of liver and biliary disease. BMJ 2001322:33-36.
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