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does anyone have prurigo nodularis with NO itch?
i have had a skin punch biopsy that confirmed i had prurigo nodularis and also a mayo clinic dermatologist confirmed i have it. when i do research on the skin condition it says it’s the most itchiest skin disease. it’s extremely rare so every doctor i see about it they don’t know how to help me. all the medications they can prescribe is supposed to help with the itch. there is no cure. i am going to see the top doctor specialized in prurigo nodularis in maryland next week im hoping to get some answers. i’m wondering if anyone that has PN also doesn’t have itch associated with it?
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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!