Reality is: Most docs and derms know little about this disease, and so far none have had any interest in researching its origins. After 20 years and as many failed treatments I understand that the "Medical Industry" doesn't like to deal with problems they don't understand. Many docs don't feel comfortable saying you have Prurigo Nodularis and avoid giving a diagnosis. Very much like cancer phobia of 50 years ago and Lyme disease, docs will blame the patient, ( You are stressed or have anxiety, you have developed an itch scratch cycle). Docs denied the existence of Lyme for decades but are now recognizing it is a parasitic borne health crisis. There is no known cause for PN, and the only real medicine that seems to help some is Dupixent. I went through many years of assessing my entire life trying to find "triggers" without any resolution. I believe I had indicators as a child with very minor eruptions that cleared up quickly but over time PM developed as a major health problem for me. We do not "cause", it is NOT a self inflicted disease. My stress is the result of have PN not the cause of it. Ultimately it becomes something of a battle to get through the day and the exhausting nights of itch, scratch, burning, bleeding, crying, and then realizing that what we are doing is exchanging itch for pain because pain is somewhat easier to cope with. It's easier to fall asleep with pain than with itch and burning. I have written to CDC to request research into PN but garnered only sympathy in the reply. Personally I believe that PN is more prevalent than we know and many suffer privately, it's embarrassing, and can be shaming like leprosy. Not everyone will talk about it but talk we must.

PN is a rare disease. It is the drug company’s that take an interest in diseases. In the time I have had M.S. there have been at least a dozen medications, costing between $40,000.00 to $65,000.00 to help with symptoms. There are 100 million people in the U.S. with M.S. Their research is phenomenal as well as their profit. With PN there is about 143,000 people, not enough profit to do the studies that are much needed. With Dupixent, PN has been piggybacked onto a medicine approved for eczema and asthma. I think a chance discovery while asthma and eczema trials were being done. I am pretty sure there were no PN trials. That being said week 14, I have a slight feeling Dupixent is helping.

It is sad, it took different skin doctors and thirteen years to get a diagnosis, I finally get a steroid cream that helps, It would be nice if they would think this important enough to find something that could help. I had hundreds of them on me and could not stop itching day and night and they would say to cut my nails so I didn't scratch it. That told me they had no clue what was happening to us.

That’s a BIG YES!!! My ears itch too. I had to self diagnose and inform my doc what it was. Following app. He agreed!
I wish us all the best of luck and help. 😢

Leilani, I totally agree with you. Ice bags truly stop, or relieve the itch for me. It is also my experience that if can use ice and not scratch that it goes a whole lot easier on me.