I didn't get diagnosed until 2019. But had the issue since 1979. Lifetime of Dr's, studies, test, biopsies, every med avail. Was on Xolair for 5 yrs, helped very little. UV light therapy was good but hard to do with work schedule. In May I started Dupixent. It's a vast improvement 60-75% improvement, but I just learned about Nemluvio last night so have lots of curiosity.
Hi ShannonI started it last January and used it through July and it did absolutely nothing for me. In July I switched to Nemluvio and my itching is pretty much 100% gone absolutely miraculous because it had gotten to the point that it was tormenting me. My skin is much better as well but I still have a few that are there but we are working on that but Nemluvio is life-changing in my opinion for this awful condition we unfortunately have been dealing with.
I'm contacting derm about Nemluvio. I just met him yesterday. He kinda specializes in PN but did not mention that med. But... He knows I have had marked improvement with Dupixent since May. But by no means the level that I'm reading about with others. I hope he will agree to allow the switch.
I had 35yrs of pretty traumatic experiences with derm starting at 9yrs old till I refused to see anymore after I was 35. I finally accepted I had some mystery condition and decided to just live with it. . It was my allergist suggested the Dupixent as he treats me for Chronic Hives. Ugh!! So much going on. It took a lot to convince me to see this dermatologist and he seems great and very knowledgeable. Thanks for your responses. Helpful.
Nemluvio is rather new to the PN world. The FDA approved it a little over a year ago.
Hi Shannon! I don't think it is recommended to use Dupixent and Nemluvio together. It may be a better idea to have a conversation with your dermatologist regarding the merits of each of them and then based on what the dermatologist has to say, plan from there. There are also adjunct treatments to use with either of them to achieve maximum benefits for you.