If I have primary biliary cholangitis, what can I do to stay healthy?
If you have primary biliary cholangitis (PBC), you may find that you are no longer able to cope with drinking alcohol. Some people just drink a small amount of alcohol on special occasions. The amount of alcohol that is sensible for you to drink will vary between people and will depend on the degree of damage to your liver.
It is advisable to take particular care around alcohol consumption if you know that you have a developing liver disease like PBC. This does not mean you can never have alcohol, but we know that excessive alcohol consumption reduces health and lifespan even in those who do not have PBC. Your liver is more vulnerable than average, so it makes sense to take particular care of it, even though there are no absolute rules around alcohol.
If you have liver failure or liver scarring (cirrhosis) you should not drink alcohol, as your liver will struggle to process it and it may speed liver failure at this stage.
There is no absolute rule to say that people with PBC, in particular, must give up smoking. However, smoking makes the risk from most diseases worse, and if you want to stay healthier for longer (and be as fit as possible for surgery if you need a liver transplant) then you should not smoke.
You should always remember to tell a doctor or a pharmacist that you have PBC before you start taking any medication. (This includes any medicines, supplements or remedies that you may buy over the counter.) This is because a lot of medicines are processed in the liver. Because your liver may not be working so well if you have PBC, you may have some unwanted effects from certain medicines.
Fitness, nutrition and diet
Worsening liver disease affects your ability to absorb a balanced diet, and chronic tiredness will reduce your fitness. Doing what you can to counter these two things will help you stay fitter for longer. Your liver is responsible for many aspects of food absorption and processing, so if you don't think about your diet you may become undernourished, particularly if you have lost your appetite, as sometimes occurs.
It is sensible to seek the advice of a dietician to help to ensure a balanced diet, and to assess whether you need food and vitamin supplements, particularly the fat soluble vitamins A, D, E and K. Your levels can be measured and supplements can be taken if needed. A daily multivitamin without iron is safe but added iron should not be taken without medical advice. Smaller, more frequent meals are generally advisable if you are unwell.
Physical activity will help you stay fitter for longer. Being physically active for at least 30 minutes every day of the week is a healthy target. Exercise increases energy levels, reduces body fat, increases muscle mass and helps prevent 'thinning' of the bones (osteoporosis).
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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