does anyone have prurigo nodularis with NO itch?

Hi, I also have been diagnosed with PN and have very little to no itching! My rash has never responded to any creams or ointments, prescription or otherwise.

I originally went to a dermatologist who was stumped and referred me to an allergist. I then ended up taking a skin prick test where, turns out, I was allergic to almost every tree, grass, bush, and weed that they tested me for.

She ended up putting me on injection biologics. First dupixent, and I have since moved to nemluvio. I saw an immediate improvement in symptoms upon starting injections. After several months on dupixent, the medication seemed to be less effective for me and side effects (eczema around eyes) were worsening. My allergist told me that this could mean I had an allergy to dupixent, at which point I switched to nemluvio. The medication seems more effective for me, the side effects minimal, the shots are less frequent and don't hurt at all (dupixent shots were very painful).

I do still have some minor symptoms, but incredibly mild compared to where I started and I feel as if I am still improving steadily.

My advice to you would be - try seeing an allergist, if you haven't already. See if you can get an allergy panel done, you may be surprised with the results (I was!). And, finally, ask your doc about injectable biologics like nemluvio to see if you could be a good candidate. I have had good results with it, but obviously every body is different and your doc may advise you differently.

I am very sorry you are going through this. Hopefully my experience can be of help. Good luck!

I have this. I believe I have a form of cercarae (from a parasitic schistosomiasis species) embedded in my tissue. It only affects my scalp, neck, and chest area. I’ve had it since I was a child and swam many hours in Ohio and Michigan lakes and rivers.
I’ve been taking praziquantel orally and it was miraculous but a couple of weeks later symptoms return. I have recently been applying topical DMSO mixed with Prazi and it seems to be helping.
Our skin is reacting to something and it’s most likely a parasite which doctors in N America have no experience with. It puts our immune systems into over drive.

I think the doctors want us to think they dont know anything about parasites because they dont want to acknowledge they exist in America. And the reason for that is they would have to give us antiparasitics and cure us and then the pharmaceutical companies they work for would lose all of us as the forever customers they want us to be. We have no health care system in America.

I started with hives all over my face about 13 yrs ago. All the Derms I saw (lots!) told me I had acne. One even put me on Accutane. I knew that was SO wrong that I stopped taking it right away (it damaged my skin all over big time). Next, I went to an Allergist/Immunologist for allergy testing. Results showed lots of allergies to environmentals (trees, weeds, grasses), chemicals (found in all products you use to do everything - like personal hygiene products and home cleaning products you inhale) and foods (lots of foods and my list changes frequently, so I get tested every 4 months now). About 8 yrs ago though, the hives got bigger and bigger like abscesses (cysts). A biopsy of one on my chin came back as PN. Now I see a Derm and an Allergist/Immunologist every few months. They both know each other, and know my situation, which helps a lot! I've NEVER had itching!!! Not even when I just had those little hives. My Allergist has me on: Gammaplex (monthly IV treatment - an RN comes to my home for this 3 hr drip - helps boost my antibodies to prevent allergies to foods) and a monthly Nemluvio shot (just started since Dupixent didn't do anything to help). My Derm gives me Rhapsido - oral med- twice-daily for chronic spontaneous urticaria (CSU) because I don't responded to any antihistamines. It is supposed to reduces hives and itching by targeting mast cells. Started that about a month ago. Sadly, being that it's my face, I always have bandaids on my sores. Some lesions that are there for many months (3 - 5 months) require, what's called, shaving off and cauterizing. It's awful!! I'm so sorry that anyone has to endure this! (FYI - Female, age 69).