Prurigo Nodularis - raising awareness of a little-known condition

It’s time to talk about a little known condition that often flies under the radar: prurigo nodularis – also known as nodular prurigo. It keeps a low profile in part because it’s uncommon, affecting around 3.27 patients per 100,000 in England.¹

We want to shine a light on patients’ experience of this little-known disease, to help raise awareness of this condition and what it means to live with it.

Prurigo nodularis is a chronic, severe itching disease, characterised by the presence of visible, itchy nodules.² The name comes from the word ‘pruritis’ which is the term doctors use to describe ‘itching’; ‘prurigo’, more specifically, describes the changes in the skin after it has been scratched for a long time.³ Its cause is not well understood, but it is thought to worsen as an itch-scratch cycle develops.² This cycle can be challenging to break as scratching can become an unconscious, automatic activity.⁴

Prurigo nodularis can be extremely debilitating to live with. Aside from the severe chronic itch, prurigo nodularis also commonly affects people’s mental health,¹ sleep quality,⁴ and social life.⁵

The defining characteristic of prurigo nodularis is the chronic itch, something that 71% of patients experience ‘often’ or ‘always’. The condition can also be extremely painful; people with prurigo nodularis also report burning, stinging, prickling or painful sensations alongside the itch.⁶ A person with prurigo nodularis told us that the chronic itch is ‘not something I forget – it’s always there’.⁷

The pervasive itch and physical appearance of prurigo nodularis has knock-on effects on the life and experience of people who live with it. We have heard moving patient testimony about the serious mental health burden of the disease, and the way that this can limits their social life. One patient we spoke to told us that she was ‘always aware’ of what her skin looked like to other people, and that she would be ‘anxious’ about going out because of her skin.⁷

The pervasive itch also means that many people living with the condition have to contend with disrupted sleep, which brings with it its own health risks.⁸ On average, people with prurigo nodularis lose 3.2 hours of sleep per night4 and many require sedatives as part of their treatment as a result.⁹

Overall, prurigo nodularis is a serious chronic condition that impacts multiple areas of people’s lives – it is something that is ‘always there’. 

Despite the debilitating nature of the disease, there are currently no advance therapies that tackle the root cause of the disease.¹⁰ Instead, existing management therapy aims to break the itch-scratch cycle through symptom management. Unfortunately, there are a large number of people who do not respond to this management therapy: almost one third of prurigo nodularis patients are described as ‘non-responders’ and can experience symptoms for more than ten years.⁶

There is therefore a real need to work to provide extra support for people living with prurigo nodularis, and to provide them hope that their condition can be better managed. To do this, we need to support greater awareness of the condition generally. Clinically, there needs to be national consistency in managing this disease, and greater guidance and education for healthcare professionals to help them diagnose and refer people, so they can get the help they need.