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Can People Using DUPIXENT For Prurigo Nodularis Please Share Experience With It?

A MyPrurigoTeam Member asked a question 💭
Eastport, NY

My Dr. recommends Dupixent treatment but it has some pretty nasty side effects. I am concerned. It seems like I would be trading one bad set of symptoms for another bad set of symptoms. TY.

September 12, 2023
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A MyPrurigoTeam Member

Dupixent has not been successful for me. I had less places of outbreaks but still had them. I also take Enbrel and Methotrexate for autoimmune disease. It may be that my immunosuppressants lessened the efficacy of Dupixent. Its definitely known as a PN treatment though.

September 26, 2023
A MyPrurigoTeam Member

Hi, so far so good. Feeling less itch and sores drying up. I've had 3 Injections of 300mg. No side effects. Hope this is helpful.

September 17, 2023
A MyPrurigoTeam Member

It did not help me whatsoever! During that timeframe my vision was bothering me which can be one of the side effects. I went off of the Dupixent, & went to eye doctor & luckily my vision was good. My PN w/Lichen Simplex Chronicus started one month after being diagnosed with the beginning of Shingles, & was given old vaccine! I was 60 years old when this started w/a mosquito like bite on my scalp, and now I am 75 w/15-20 nodules on my scalp, & it is horrible!

October 9, 2023
A MyPrurigoTeam Member

Mary... thank you... your comment on the pants!! Clothes of any kind is,.. well, an adjustment.
As to the being thankful of not itching 24/7, I can attest to that! I am worried that by getting off Dupixent it'll come back... guess the only way I'll know, right, is to try.
Btw - I always did think that statement of "keep your pants on.." was a little sexist, then just plain off! Now I know it's someone who knows nothing of PN!

September 16, 2023
A MyPrurigoTeam Member

I have been on Dupixent for just over a year. The upside, I don't have the 24/7 itch like I've got fleas, and I'm seeing murder to stop them (not really murder, but getting into a crazy state of mind). The past 6 months or so, the side effects are coming in stronger for me, and I'm getting concerned because winter in MI is no place to be with muscles that constantly scream. So, muscle aches, muscle cramps, eye issues even tho not actual congunctivitis it's tenderness, watering, vision in & out sort of. Strange sores popping out like a football team by my lip. Lesions that go straight to scabs on scalp. Oh, sense of smell is like a Maine Coon cats!! (Kind of, hers is better) But I had good sense of smell before, now I can tell when a Chevy goes by, and who opened their doors to house by the perfume/cigarette smell, etc.
So, I see my Dermo in the morning, will run things by him, see what happens. I don't want that crazy itch, but...
I don't think everyone who gets on it is the same. There seams to be some common sideffects, but some have none too.
Good luck on whatever your decision and path lead. I hope it is itch and lesion free!
Oh, I don't have hot flashes like women typically do, but, humidity will make me feel like I can't breath, I have to move the air. Strangest thing.
Update: I forgot about the cough! I can cough for days weeks on end, no actual reason, not productive. It quits. When it starts, it's usually in evening/bedtime, and worse when I lay down. But it's not all the time, not directly sinus related. I forgot because it had been a few nice no cough weeks,... I was reminded 2 nights ago. Is it dupixent with my asthma and COPD issues? Is it just because life is not hell-enough? I will find my moment of joy as I can, breath thru the rest of the time.

September 12, 2023 (edited)

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