Fatigue
More than half of all those with PBC have fatigue and 1 in 5 people have it severely. Fatigue caused by a disease isn’t just feeling a bit tired. Of course sleeping and eating well will help to minimise it. But you can’t fight your way through it. It’s more a case of learning how to manage it.
It may help at first to keep a diary of how you’re feeling. You may find that a pattern emerges – the times of day you’re at your best, or particular activities that make your fatigue better or worse. Then you may be able to adjust your routine to suit you better.
Many people have trouble asking for (and accepting) help. This may have to change! Explain to your family and friends how your fatigue affects you and let them support you. It won’t help anyone if you run yourself into the ground because you’re determined not to give in. Although we don’t like to ask, loved ones are often keen to help and just don’t know how.
You may not always feel like it, but try to make sure you get regular exercise. There is research evidence that exercise can help with fatigue related to PBC. Regular exercise is good for mental health too. Don’t overdo it though. You’ll need to find a balance. Speak to your doctor or specialist nurse before starting a new exercise regime.
Other medical conditions linked to PBC can make fatigue worse. If you are finding it hard to manage, speak to your specialist nurse or consultant. They can check whether there is any other medical reason for your tiredness, such as anaemia, thyroid disease or the medications you’re taking.
Visit our section on fatigue and liver disease. There is more advice on how to manage, including on sleep and diet, as well as ideas for exercise and how others can help and support you.
Itching
Around 4 out of 5 people with PBC suffer from itching at some point. It isn’t related to how bad your PBC is and may actually improve in more advanced PBC. As well as being a frustrating symptom in itself, itching can affect your sleep quality, increasing fatigue and making it harder to cope.
Doctors think that the itching in PBC is caused by bile acids circulating in your bloodstream. There are several medicines that they can offer to help reduce it. So do talk to them as soon as itching becomes a problem for you. If the first medicine you try doesn’t help, do go back and ask to try something else. The commonest medicine doctors suggest is colestyramine. There is more about how to take this, and a list of other medicines used for itching in the page on treating PBC.
When itching is severely affecting quality of life, doctors may consider a liver transplant Your doctor will be able to tell you whether this is an option for you.
Do tell your doctor or specialist nurse if you are troubled by itching, despite treatment. They may be able to suggest other treatments you could try. They will also be able to tell you whether any research studies are looking into new treatments for itching.
Diet and PBC
With some liver diseases, you need to make changes to your diet. With PBC, as long as you are reasonably well and your liver function is satisfactory, it’s best to try to eat a healthy, well balanced diet. It’s the same standard advice you’ve probably already come across – lots of fresh fruit, veg and fibre. And less fat, sugar and salt.
There are a couple of particular situations with PBC where you may need vitamin supplements, even if you are eating healthily. Because PBC increases risk of osteoporosis, your doctor may suggest you take a daily tablet of calcium and vitamin D. Those with more advanced PBC may need to have the fat soluble vitamins A, D, E and K as supplements because it is more difficult to absorb these if your liver isn’t working well.
If you’re struggling with any aspect of your diet, or if you have advanced PBC, do ask your doctor to refer you to a dietician. If you have advanced PBC, you may need extra calories and protein. We have advice on diet and cirrhosis that may be helpful.
Alcohol
Having PBC doesn’t mean that you can’t drink any alcohol. But it’s a good idea not to overdo it. One of the liver’s many jobs is to process alcohol and other drugs. Drinking too much, too often, will put extra strain on your liver. Another reason is the risk of osteoporosis. Heavy drinking can affect your bone density by decreasing the activity of cells that lay down healthy bone.
Smoking
No health information these days is ever going to recommend smoking! It’s related to so many illnesses and is never a good idea if you’re trying to stay healthy. It isn’t a cause of PBC, but it is known to make liver scarring worse and increase the risk of liver cancer. And, as with heavy drinking, smoking can lower your bone density and lead to osteoporosis.
Pregnancy
It’s perfectly possible to become pregnant and have a baby if you have PBC. If you’d like to start (or extend) your family, speak to your doctor before trying to get pregnant. Generally speaking, medicines for PBC are safe during pregnancy but you need to check that everything you take is safe for your future baby. Itching can get worse during pregnancy and you may need to stop taking medicines for itching until the end of the first three months of a pregnancy. Your doctor can advise you.
If you have cirrhosis, you can still have a baby, but you will need additional tests and monitoring to keep you and the baby healthy. It is important to discuss plans for having a family with your doctor before trying if possible, to allow time for planning any additional tests or treatments that may be helpful.
Work and play
With a life-long condition, it’s all too easy to let it take over your life. At times it may seem as if it’s on your mind all the time. And periodically there will be medical appointments, for screening, blood tests, seeing a dietician or your doctor for check ups.
It’s really important to make time to see people and take part in activities you enjoyed before you were diagnosed. Fatigue and itching can take their toll so it’s important to top up your morale and sense of well-being regularly. Managing fatigue will be crucial in making sure you have the energy to still do what’s most important to you.
How much PBC affects your work depends on what you do for a living. As PBC is a long term condition, you are covered by the Equality Act 2010. This means your employer has to make reasonable adjustments to make sure you are able to do your job, for example flexible working hours and time off for tests and check ups. You may need to ask to adjust your hours if you are struggling with fatigue. Contact the Citizen’s Advice Bureau for advice and support.
For anyone living with a long-term condition, money can be an issue. Read our information on managing your money, for advice on benefits, insurance and much more.
You can find out find out more about working when you have a liver condition here.
Where to go for help when you need it
When you are referred to a liver specialist, you may have the help and support of a specialist liver nurse. They can be invaluable sources of advice. It’s not just managing your condition – although of course, they can help with that. It’s also that they understand the system.
Having an illness treated at a specialist centre may mean that your condition is managed jointly with them, with your local hospital and with your GP. Your specialist nurse can help with smoothing communications between them all, and with arranging appointments when you need them.
If you haven’t been given the contact details of a specialist nurse, do ask. You should also have the phone number of your specialist liver unit so you can call them if you need medical advice.
It’s important to look after your health generally when you have any chronic condition. There are vaccines that people with chronic liver disease, including PBC, are advised to have, including the annual flu vaccine. Do check with your GP that your vaccines are all up to date. We have more information about liver disease and vaccines.
Looking after your mental health
Being diagnosed with a chronic condition is almost bound to affect you mentally as well as physically. You may be preoccupied by it at first and find it difficult to concentrate. You may have good days and bad days.
Generally, it becomes easier to cope in time. But if you feel very anxious or have been feeling low for a couple of weeks, you may be depressed. Depression can make fatigue worse, cause you to lose your appetite and have trouble sleeping. Everything can seem more of a struggle.
If you think you might be depressed, talk to your doctor or specialist nurse. They will be able to help and support you. See our information on looking after your mental health when you have a liver condition for more advice and sources of support.
Special thanks
All our publications are reviewed by medical experts and people living with liver disease.
We would like to thank:
Our patient focus group and case studies.
Our patient reviewers, Jennifer Voller and Yvonne Fletcher.
Our clinical reviewers, Dr Neil Halliday, Royal Free Hospital, London and Janeane Hails, Addenbrooke’s Hospital, Cambridge.
Published: October 2024
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