An article by John Forni, Speciality Care Medical Head, Sanofi UK and Ireland
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.
- Morgan CL, Thomas M, Ständer S, Jabbar-Lopez ZK, Piketty C, Gabriel S, et al. Epidemiology of prurigo nodularis in England: a retrospective database analysis. Br J Dermatol [Internet]. 2022 Aug 1 [cited 2023 Mar 16];187(2):188–95. Available from: https://pubmed.ncbi.nlm.nih.gov/35083742/
- Zeidler C, Ständer S. The pathogenesis of Prurigo nodularis – ‘Super-Itch’ in exploration. European Journal of Pain [Internet]. 2016 Jan 1 [cited 2023 Mar 17];20(1):37–40. Available from: https://onlinelibrary.wiley.com/doi/full/10.1002/ejp.767
- British Association of Dermatologists. Nodular Prurigo. 2023.
- Zeidler C, Pereira MP, Ständer S. Chronic Prurigo: Similar Clinical Profile and Burden Across Clinical Phenotypes. Front Med (Lausanne). 2021 Jun 29;8:990.
- Pereira MP, Hoffmann V, Weisshaar E, Wallengren J, Halvorsen JA, Garcovich S, et al. Chronic nodular prurigo: clinical profile and burden. A European cross-sectional study. J Eur Acad Dermatol Venereol [Internet]. 2020 Oct 1 [cited 2023 Mar 20];34(10):2373–83. Available from: https://pubmed.ncbi.nlm.nih.gov/32078192/
- Aggarwal P, Choi J, Sutaria N, Roh YS, Wongvibulsin S, Williams KA, et al. Clinical characteristics and disease burden in prurigo nodularis. Clin Exp Dermatol [Internet]. 2021 Oct [cited 2023 Mar 17];46(7):1277–84. Available from: https://academic.oup.com/ced/article/46/7/1277/6598573
- Sanofi. Prurigo nodularis case study - Jude’s story (data on file). 2022.
- Medic G, Wille M, Hemels MEH. Short- and long-term health consequences of sleep disruption. Nat Sci Sleep [Internet]. 2017 [cited 2023 Mar 30];9:151. Available from: ncbi.nlm.nih.gov/pmc/articles/PMC5449130/
- Pereira MP, Steinke S, Zeidler C, Forner C, Riepe C, Augustin M, et al. European academy of dermatology and venereology European prurigo project: expert consensus on the definition, classification and terminology of chronic prurigo. Journal of the European Academy of Dermatology and Venereology [Internet]. 2018 Jul 1 [cited 2023 Mar 17];32(7):1059–65. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/jdv.14570
- Kowalski EH, Kneiber D, Valdebran M, Patel U, Amber KT. Treatment-resistant prurigo nodularis: challenges and solutions. Clin Cosmet Investig Dermatol [Internet]. 2019 [cited 2023 Mar 30];12:163. Available from: ncbi.nlm.nih.gov/pmc/articles/PMC6400231/
Date of Preparation: October 2023