I’m 27 years old and have had eczema my entire life. Over the past 1.5 years, though, my eczema became less manageable, and I started to seek out alternatives beyond just testing out different lotions, oatmeal baths or steroid creams.
About three months ago, I started taking Nemluvio, which is a 1x/month injection. I don’t ever make posts on Reddit, but when I was starting Nemluvio, I was curious about the medication and how other people were faring with it. I wasn’t able to find a ton of information, and now that I’m three months in, I feel qualified and obligated to share an update.
First and foremost, the medicine does what it promises. The first day I received my initial dose, my itching all but stopped. This was such a big breakthrough for me, as I’d been uncomfortable for several weeks prior while waiting to get in to see my dermatologist.
Side effects were minimal the first few weeks, including a few headaches here and there, but nothing crazy. Towards the end of the first month and approaching what would be my second dose, my symptoms became dramatically worse. I developed nummular eczema on my arms, shoulders, upper back, thighs and even my stomach in a few small patches. This was a first for me, as I’d never experienced nummular eczema before, and it was distressing to know that the medication responsible for taking away the itch was ultimately causing… more eczema. It felt very counterintuitive at the time, and I still feel that way.
Additionally, I developed extremely dry skin on both my hands and the back of my neck. Almost nothing could penetrate it, including African Shea Butter (which if you’re familiar, is moisturizing AF). This was both frustrating and embarrassing.
Something my dermatologist failed to mention is that Nemluvio works best when paired with some sort of topical cream or ointment. Not necessarily a steroid, but something to help spot treat areas that are experiencing nummular eczema. I started using a TCI (Tacrolimus) that I had previously been prescribed, and almost immediately, the areas started to heal and the discoloration began to fade.
It’s been weeks since I reintroduced Tacrolimus to my routine, and it’s true that my discoloration is still there, but it’s growing better every week. According to some information I’ve found online, it can take your body anywhere from 3-5 months to adjust to Nemluvio, and I’m just now hitting that sweet spot.
Sharing this in case anyone is a) taking Nemluvio and struggling with these same side effects or b) considering starting this medicine.
Thus far, I’d absolutely say that it’s been worth it because now I can sleep again, whereas the itching was previously keeping me awake. My skin barrier is healing and the dry skin I mentioned is also improving. Ultimately, it takes a while to see results and for the body to adjust, but for anyone who’s considering, I would recommend it but urge you to keep in mind the side effects. Obviously, everyone’s body responds differently, but I think I’m almost on the other side of it all.