“When patients come to a specialized clinic like mine, they’ve usually had the disease for five to ten years and have seen ten, twenty, different physicians. That’s the typical journey of a patient with prurigo nodularis.” 

Dr. Martin Metz, MD, Deputy Director, Institute of Allergology Charite Universitatsmedizin, Berlin  

Prurigo nodularis is a chronic skin disease linked to the nervous and immune systems that remains under-recognized despite its profound impact on patients’ lives.^1-6 The intensely itchy, firm nodules can cause a lot of physical discomfort, emotional distress, and social withdrawal.^2,7-9 Yet, for many patients, the journey to diagnosis is long and fraught with uncertainty, often marked by misinterpretation of symptoms and delays in receiving appropriate care.^10,11 

Setting off 

Despite the visible signs, the road to a correct diagnosis can have many hurdles. Often, patients see several doctors over the course of many years before receiving a definitive diagnosis.^10,11 The nuanced nature of prurigo nodularis symptoms – ranging from itch intensity to lesion distribution – can make diagnosis particularly challenging.^10,11 

Additionally, historical misconceptions of symptoms such as chronic scratching have been misunderstood as behavioral or psychological issues, rather than signs of a physical disease.¹² This misinterpretation can compound emotional distress, leaving patients feeling isolated and invalidated.^10-12 

Delays and diversions 

The rarity and lack of widespread awareness of prurigo nodularis means that many doctors may be unfamiliar with its presentation. Combined with the varying symptoms and potential overlap with other skin conditions, this can delay referrals, diagnosis, and treatment.^10-12 

This lack of familiarity contributes to a fragmented patient experience, where individuals may be treated for symptoms without a clear understanding of the root cause. As a result, patients often endure years of trial-and-error and growing discomfort before reaching a specialist.^10-12 

Changing gears 

Initiatives such as World Prurigo Day play a vital role in raising awareness and encouraging conversations amongst doctors, researchers, and patients, to help to break down misconceptions and promote earlier diagnosis and treatment. 

Recent research has also begun to reshape understanding of prurigo nodularis. It is now recognized as a condition, with unique interactions between the nervous and immune systems, reinforcing the need for targeted approaches to care.^1,13 

Prurigo nodularis: Diagnosis and disease management 

Finding a new route 

Historically, treatment options for prurigo nodularis were limited. Today, the landscape is changing, and new targeted therapies offer hope for improved disease control.¹ 

Commenting on the importance of a varied treatment landscape, Dr. Metz said: “It’s always good to have treatment options with different targets or mechanisms of action, because there may be different factors involved that are unique to the patient. This is why it’s important to have different tools in your toolbox that you can use based on the patient’s individual circumstances.” 

A map to higher ground 

Despite progress, there is still much to be done to improve the prurigo nodularis care pathway, including continued funding for research to better understand the disease and uncover ways to treat it, and expanded awareness for both patients and doctors – particularly in primary care and dermatology – to support earlier recognition and referral, and ensure that patients receive timely and appropriate care.  

By addressing these gaps, the healthcare community can move toward a more informed and compassionate approach to prurigo nodularis management. 

Reaching Our Destination 

We remain committed to supporting the prurigo nodularis community; amplifying patient voices, driving innovation in treatment development, educating clinicians, and fostering a future where no one has to navigate this complex disease alone.