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Hormonal and Rare Conditions Primary Biliary Cholangitis Living with PBC
Living with PBC
Living with PBC

Living with PBC

Although PBC is a rare disease, you are not alone. Across the globe, it is estimated that nearly as many as 40 people in every 100,000 suffer from the disease.1

There are several organisations that provide support, information and opportunity to connect with others who might share a similar story:

  • PBC Foundation
    The PBC Foundation website is full of useful information, news, resources, events and support groups.
  • PBCers Organization
    The PBCers organisation aims to be the go-to resource for peer support and the latest information on PBC.
  • British Liver Trust
    Signposting links to online and face-to-face support groups, the British Liver Trust website provides practical support via Nurse-led helplines as well as patient stories alongside information and resources.

With a lifelong condition, it can be easy to let it take over your life. 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 ensuring you have the energy to continue doing what’s most important to you.

Day-to-day life

While it is important to discuss your symptoms and available treatments with your clinician, there are also self-care practices that can offer some relief. While more attention and new research into alleviating symptoms of PBC is great in the long term, sometimes you need something here and now to help. 

Itchiness

While creams and lotions are commonly recommended, many in the PBC community find that refrigerating these products can enhance their soothing effect. In general, applying something cool to the skin can provide relief - whether it's a bag of frozen peas on the most affected areas, the use of a cooling pad, or even a bucket of cold water to dip your feet in at night when the itch makes it hard to sleep.2

Anecdotal evidence suggests that dietary changes can help alleviate the itch. Many people have reported improvement after eliminating foods such as nuts, wheat, sugar, and alcohol. One of the most commonly mentioned dietary adjustments is cutting out chocolate.2

Others mention that it can help to wear loose-fitting clothes, avoiding scratchy or irritating materials such as wool.

Fatigue

Fatigue is a common and often challenging symptom of PBC, making it essential to conserve energy and use it in ways that support your well-being. The goal isn't to fight fatigue, but to manage it.

Fatigue generally stems from three main areas:

  • Physical: illness, weight, dehydration, poor sleep
  • Lifestyle: lack of activity, poor sleep habits, overworking, reliance on ‘false energy’ foods
  • Psychological: stress, depression, emotional strain, negative thinking

While fatigue in PBC has medical causes and currently there are no licensed treatments to cure it, there are still practical steps you can take to help yourself feel better.

One powerful example: losing just 2% of your body’s fluids can lead to a 20% drop in both physical and mental performance. That’s why something as simple as staying well-hydrated can make a meaningful difference to both fatigue and quality of life.2

It’s about spending energy wisely - on activities that leave us feeling better, not worse. That might be something you love, something that brings a sense of accomplishment, something easy or affordable to do, or even something that simply brings a smile.

Even small amounts of movement can boost energy and make daily tasks easier. Over time, regular exercise is one of the most effective ways to manage fatigue. While it may feel difficult to start, a personalised, gradual plan can lead to real improvements.

More generally, establishing a routine and following good sleep hygiene, like reducing caffeine, nicotine, and alcohol, can make a positive difference.3

Mental Health

It is equally important to look after your mental health. A study conducted by the PBC Foundation highlighted that one in three PBC patients experiences depression or other mental health issues.2

We are all capable of feeling low, especially when our physical health is affecting our quality of life, but it is important to distinguish between “feeling depressed” and the clinical condition of depression, which requires specialist treatment, e.g. medication and/or talking therapies.

Practicing mindfulness techniques, self-care, and reaching out to loved ones for support can help you cope with the diagnosis of PBC and, consequently, live with PBC.

Avoid certain medicines

Something to be aware of is that the damage to your liver can affect its ability to process certain medicines. This means you may need to avoid certain medicines. Ask your doctor about any medicines you should avoid. Tell a pharmacist or any healthcare professional treating you that you have PBC.3

References

  1. Orphanet. Primary biliary cholangitis. Available at: https://www.orpha.net/en/disease/detail/186. Last accessed April 2025.
  2. PBC Foundation. Self-care for PBC Patients. Available at: https://www.pbcfoundation.international/living-with-pbc/self-care/. Last accessed April 2025.
  3. NHS. Primary biliary cholangitis. Available at: https://www.nhs.uk/conditions/primary-biliary-cholangitis-pbc/treatment/. Last accessed April 2025.