Chronicity

Primary biliary cholangitis: giving patients a voice to build a therapeutic partnership

The “All the Feelings with PBC” campaign is launched. New treatments that are effective both in managing the disease and in treating its symptoms

by Cristina Rigamonti*

14 September 2026

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3' min read

Translated by AI

Versione italiana

3' min read

Translated by AI

Versione italiana

Primary biliary cholangitis (PBC) is a chronic and relatively rare autoimmune disease of the liver, which mainly affects women aged between 45 and 65. It is a complex condition which, if not diagnosed and treated promptly, can progress to advanced stages of liver disease, eventually necessitating a liver transplant. Early diagnosis is therefore the first fundamental pillar of the treatment pathway.

The condition may be asymptomatic at onset and be diagnosed following the incidental detection of abnormal liver function test results in a blood test. In other cases, it may present with characteristic symptoms, in particular itching and fatigue (asthenia).

Itching and fatigue

Itching often follows a circadian pattern and tends to occur mainly in the late hours of the day. It may be widespread or localised to the limbs, the trunk or the scalp, in the absence of any skin lesions. It can also disrupt sleep and the quality of rest, and have a negative impact on social relationships. Fatigue, on the other hand, is characterised by a profound and persistent feeling of tiredness and weakness, which can make it difficult to carry out normal daily activities and reduce the ability to concentrate at work.

These symptoms, which can sometimes be debilitating, have a significant impact on patients’ quality of life and their psychological and emotional wellbeing. They can also appear in the early stages of the disease and are not related to the severity of liver damage. Despite their impact on daily life, they are sometimes underestimated or not given sufficient consideration, thereby contributing to a delay in diagnosis.

Although PBC is considered a rare condition, recent data from the literature, as well as that collected at our Centre, show an increase in new diagnoses. Furthermore, one in six patients is diagnosed when the disease is already at an advanced stage. At our Centre, within the Maggiore della Carità University Hospital in Novara, a screening programme is currently underway for women aged between 40 and 70 who attend the Pre-admission Service. The aim is to detect the condition at an early stage, even when it is completely asymptomatic.

The therapeutic process

The current management pathway for PBC involves, following diagnosis and careful staging of the disease, the initiation of first-line treatment. Where necessary – in cases where there is an incomplete or inadequate response to first-line therapy – treatment is escalated to new second-line therapeutic options. The aim – which is particularly important in patients with more severe disease – is to achieve complete normalisation of liver function tests, thereby ensuring maximum long-term protection of the organ and tangibly improving the prognosis. The new therapies are effective not only in treating the disease itself but also in managing symptoms, particularly pruritus. Symptom management represents the second pillar of PBC management, as it is essential for improving patients’ quality of life.

Today, we take a holistic approach to the disease, which takes into account both its severity and any impairment of liver function, as well as quality of life and the impact of symptoms on daily life. The clinical assessment and the resulting choice of treatment must systematically incorporate all these aspects.

Behind every diagnosis there is a person, with their own life story and experience of the illness. It is the healthcare professional’s responsibility to provide holistic care for the person living with the condition.

Raising awareness of PBC leads to earlier diagnosis and helps patients overcome feelings of isolation and abandonment, making them feel listened to and understood throughout their entire treatment journey.

An awareness campaign

The campaign “All the Feelings with PBC. Voices and emotions of those living with primary biliary cholangitis” plays an important role for both patients and the medical community. On the one hand, it helps to raise awareness of the condition and its impact on quality of life; on the other, it offers us professionals an important opportunity for reflection, reminding us how vital it is to listen to and understand a person’s day-to-day experience, beyond the disease itself.

Only through a relationship based on listening, empathy, knowledge and trust is it possible to provide truly comprehensive care. The aim, in fact, is not only to ensure the best possible course of treatment and to halt the progression of the disease, but also to contribute to the patient’s overall well-being.

This genuine therapeutic partnership is the key to tackling primary biliary cholangitis with greater awareness and confidence in the future. PBC is, after all, a concrete example of how clinical and pharmacological research can improve and transform therapeutic paradigms. The message from clinicians can therefore only be one of hope and optimism: today it is possible to manage the disease more effectively, protect liver health and restore well-being and quality of life to those affected by it.

*Lecturer in Gastroenterology at the University of Eastern Piedmont

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