What is Primary Biliary Cholangitis (PBC)?
The exact cause is not clearly understood, it is classified as a progressive auto immune condition that can destroy some of the tubes that link your liver to your gut. These tubes are called bile ducts.
Will I experience any symptoms?
Some people diagnosed with PBC will never experience any symptoms associated with the condition, but some patients can experience tiredness, intense itching (the intensity will vary from person to person), dry eyes and/or mouth. In the later stages of the condition you may also experience jaundice (yellowing of the eyes and /or skin). There are a number of treatments to help alleviate symptoms associated with PBC and these treatments will be discussed with you on your appointments or if you contact the liver team for advice in between appointments should you experience any symptoms.
How is PBC diagnosed?
PBC is diagnosed after receiving a clinical history from you on the basis of the symptoms you are experiencing, alongside this you will have blood tests and possibly an ultrasound scan and/or a FibroScan (measures the stiffness of your liver).
What are the benefits of the treatment?
Treatment focuses on relieving symptoms and slowing down the progression of the condition. At this time doctors are unable to cure PBC, or completely stop its slow destruction of the bile ducts, because of this PBC is a common reason for liver transplantation.
Looking after yourself
Alcohol
Alcohol can be consumed but you must adhere to safe alcohol levels of 14 units or less per week. If you have liver cirrhosis we advise abstinence from alcohol.
Diet & Exercise
There are no specific dietary or exercise requirements but maintaining a well-balanced healthy diet and adhering to regular exercise daily is essential to overall wellbeing and is recommended. To eat healthily you need to get the right balance between different foods. For most people, a well-balanced diet is one that is low in fat, sugar and salt, and high in fibre. Your diet should also contain enough protein and a wide range of vitamins and minerals. It is important to remember that your body’s nutritional needs may vary depending on the type and severity of your condition. Particularly, if you are unwell and losing weight you may need to vary your diet
Will I need follow up appointments?
All patients with PBC will have either a follow up telephone or face to face appointment every 6 to 12 months with a consultant or nurse practitioner to assess how you are. Your bloods will be taken at this appointment, and you will be contacted via letter or telephone if further blood tests are required.
What will happen if I do not attend an appointment/ telephone consultation?
If you do not attend your outpatient/telephone appointment you may be offered an alternative appointment or referred back to your GP. They will discuss with you whether you want to engage with the hospital for further appointments or if you would rather be followed up by your GP.
If I have any questions who should I contact for advice?
You could contact one of the liver nurses via our hospital switchboard telephone 0191 482 0000 Mon to Fri 8:30 am until 4:30 pm, or via their direct help line 0191 44539345.
Alternatively you could speak to your consultant’s secretary or seek the advice of your GP.
Out of hours if you need to talk to someone about your appointment or any other issue which could not wait until the next working day during office hours you could contact the hospital switchboard and ask to speak to the senior nurse.
If you require more information about PBC please go to www.britishlivertrust.org.uk or www.livernorth.org.uk