Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyPrurigoTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
November 22, 2025
 · 
Reactions

Answer Summary

Members passionately agreed that prurigo nodularis lesions appear first from beneath the skin before causing itching, burning, or pain,... Read more

Members passionately agreed that prurigo nodularis lesions appear first from beneath the skin before causing itching, burning, or pain, directly contradicting the common medical narrative that scratching creates the nodules. Several members shared frustration with victim-blaming from medical professionals who lack understanding of the condition, with some even being referred to psychiatrists and told they were delusional, while others emphasized the importance of self-advocacy, aggressive treatment with prescription topicals like Triamcinolone and Clobetasol, and eliminating certain foods to reduce symptoms. A recurring theme was empowerment through shared knowledge, with members encouraging each other to demand better care, trust their own experiences over dismissive doctors, and recognize that this disease is not their fault.

A MyPrurigoTeam Member

I totally agree, Marc. I’m sure that, together, the people on ‘My Prurigo’ could write a dossier on the disease and make a much better job than any of the ‘so called’ experts. When I tried to get some information from a dermatologist, he whined, “Why do you ask me these questions…. I don’t know the answers!”
The reason I was asking the questions is that he was a consultant dermatologist and was expected to be an ‘expert.’
Nodular Prurigo seems to be a little known disease which is not rated as interesting by the people in the field of dermatology. It’s sad.
Patricia.

November 24, 2025
A MyPrurigoTeam Member

A lot of victim blaming seems to accompany this disease.
I've got nodes on the bottom of my feet. As if I go around scratching the bottom of my feet.
TBH, after dealing with this for only a few months, I feel I have a better handle on this disease than most doctors.
That's not idle bragging. I have two different Auto Immune diseases and a controllable but incurable cancer so I have been doing lots of research these last few years.
PN is just my newest affliction.
Prurigo is poorly understood (clearly) and doctors hate admitting when they don't know something. So they throw stuff out there and blame it on you rather than their lack of knowledge and tools.
The disease drives the nodes and the itch. It is not the other way around. Anybody who says otherwise is ignorant. Scratching will worsen, of course.
But IT IS NOT YOUR FAULT.
The other thing I want to add is to be aggressive in treating the nodes. There are some excellent topical Rx creams/ointments: Triamcinolone, Clobetasol, Tacrolimus, and Opzelura are the weapons in my armory. Two are steroids, one is a JAK inhibitor.
Talk to your doctors - ask questions, demand options.
You are a victim of this disease.
Do NOT let yourself be victimized by it.

November 24, 2025
A MyPrurigoTeam Member

I have said time and again we don't cause them. They erupt from below. They don't always even itch but hurt.

November 22, 2025
A MyPrurigoTeam Member

Same here bumps pop up hurt then itch, seems to me it’s in the wrong order. I feel like my bumps don’t heal because of the itching.

December 29, 2025
A MyPrurigoTeam Member

Patricia, I agree with the stress, I also have dealt with stress all my life and I was always allergic to insect bites even as a child but didn’t develope PN until 2004.

December 7, 2025

Related Questions

View All
A MyPrurigoTeam Member asked a question 💭
Pottstown, PA