r/dupixent

So, I have adult onset of eczema. For 60+ years, I had a zit or two, an ingrown hair or two and one small melanoma removed, likely from a severe childhood sunburn. Pretty good life until the bitch eczema decided to move in 18 months ago unannounced.

As you know, one query of anything “eczema” will fill your social media feeds with opportunities to purchase “hope and a cure, or your money back”. Lotions, potions, body washes, soaps, prebiotics, probiotics and on and on and on. Even cow fat. Yum!

Everything that was my life is now not my life…no laundry soaps, but enzymatic cleaners, no dryer sheets, but wool balls from the butts of rare Scottish goats, no fragrances in anything, humidifier in the master suite, even an app to keep me from buying anything that might offend any potential allergic dermatitis based on a highly suspect and inconclusive patch test.

So, our newest internet friends offering “hope and a cure, or your money back” all want time, a lot of time. 30 days won’t cut it for any of the above mentioned modalities, no, we need at least 60-90 days or even longer.

If they need so much time, my question to you as the 30M eczema sufferers plus advocates in the US, how can a body wash or soap help us out? Everybody else needs at least 60-90 days, but if you’re anything like me, body washes and soaps remain on my skin for something between one and three nanoseconds in the shower…that water is moving fast!

My ask is, does anybody have a body wash or soap that you have isolation tested that provides anything more than anecdotal evidence of relief and God help me, some level of “healing”?

I’ll stand on the hill they are all appealing to your late night scratchiness/bloody/crusty vulnerabilities…eagerly awaiting your thoughts…scratch on amigos!

I start dupixant today,, 2 shots of 300ml in office.

I'm TERRIFIED of new meds,, I've had a few med reactions before so I struggle even taking Advil.

Has anyone had any reactions ? How severe? How long after injection?

Advice is very welcome,, I have no real insight to this med outside of needing it for my severe facial eczema and knowing it's a biologic.

I had my loading yesterday. I've had double cataract surgery after TSW.. already in dry eye meds.

I'm just a bit anxious about eye side effects... There's a lot of posts on this.

But I'm curious ... Did anyone have zero side effects? Or no eye side effects?

I have a 5 year old son with horrific eczema all over his body. He spends 75% of his day scratching. It’s on his arms, his wrists, his ankles, the back of his legs- and any spot on his body that isn’t dry and cracked is just thick red patches all over. We have done every cream, oatmeal baths, zyrtec every day, wet wraps, no detergent.. nothing works. He has other kids make comments about his skin and it breaks my heart. I am strongly considering this as an option but I worry so much about the pain of the injection for him. He’s autistic and he is HIGHLY sensitive to pain, even super minor things. I also worry about what happens if he goes off of it. We don’t have insurance so I’m putting the myway application in today and praying we can get it covered. Anyone out there have any advice on if it would be worth it?

Hello,

I have a flight to Greece and then will switch planes in Athens to one of the islands. I need to take one dose of dupixent a few days into the trip. What's the best way to store and bring the dupixent on the flight and also have it survive the hot climate for a few days?

I'm afraid to store it in the hotel fridge since those mini fridges almost always freeze stuff in my experience...

I’m on my 9th dose now (~3 months in). Been using Hycosan eyedrops and they’ve definitely helped but I still get itchy eyes and wake up with them a bit swollen. For any Duplimab users, how long did you have eye side effects go on for? Thanks

Do we know if there are ANY alternative treatments to Dupixent or are we forever going to be stuck with injections?

I’m not talking about switching to another biologic injection for eczema and I’m not talking about steroids since taking those long term would ruin your organs.

Is there any hope of a pill or cream or something that works as well as Dupixent that doesn’t take the form of an injection?

— (Personal context below)

I’m really struggling to continue my injections. So far I’ve done 5.
For context I have CPTSD and earlier this year (January) I went through some intense medical neglect & trauma that I still have flashbacks from.

The raw pain of the Dupixent injection is so similar to some of the traumatic pain I experienced earlier this year that I regularly end up breaking down into tears and flashbacks just thinking about the pain I have to endure.

I’ve found that the only way I can cope is to burn my skin with ice packs till my stomach goes completely numb and red. I barely feel the injection at all but the burns tend to hurt almost just as much as the injection normally does (somehow it’s more bearable mentally).

It takes roughly an hour everytime for me to accept my fate and endure the injection that takes maybe 1 minute to actually do.

I have noticed significant improvement on the medication and I am forever grateful that I’ve seen improvements but there has to be a better way.

If I and many other adults using this medication regularly have similar episodes to mine, how do we expect children to cope? How is this truly the best form of treatment?

Hey! For around 1.5 years now I have been on a LONG journey with my dermatologist, trying to overcome my new forth skin issues. It’s been a serious debate abt whether it is psoriasis or exczema. I’ve had severalll biopsies and I still don’t have a definitive answer. My scalp biopsy showed mainly psoriasis (the first time the dr discussed the results with me) , my skin biopsies have proven it to be eczema. I’ve tried many creams and shampoos which has definitely decreased my flares but it’s all been quite short term. My doc now wants me to go on dupixent. I’ve heard great things about it and would love it. However, my scalp is my biggest issue, and I just want to know if Dupixent has helped anybody’s scalp?

My scalp issue: flaky, weepy patches. Comes back in at least 12 hrs after washing my hair. Can be very itchy and burn. Ahhh it went away for quite some time and now it’s back and I don’t know why!!!😭 took time for granted for real.

Any help is greatly appreciated! Thanks in advance.

It’s so warm where I’m at, and the AC sucks so the apartment doesn’t ever get to 77° F, it’s always at least(!!) 83° in here. It’s in the high 80s this week so far, so it’s probably closer to 87°.. there’s no cooler room, what do I do? Can I store the Dupixent shorter than the recommended time of 45 minutes, for example, maybe 30 minutes? Or would that still do damage. I noticed I’m also starting to flare up this past month or two and I’m starting to believe this is why because I haven’t flared up ever since I started the medication 3 years ago. If anyone has any advice, it is greatly appreciated!!

edit: sorry i didn’t make this clear, but i do have a fridge to put the dupixent in. the issue is that i have to let it sit out of the fridge for at least 45 mins in a place that’s room temp but all of the places in my apartment are too hot during the summer!

I have been using Dupixent/Dupilumab for 6 years now, and it’s been a life saver. In the past months however I’ve had my first big flare up since using it, and despite going back to a stronger dose (once every 2 weeks, I had been using it once every three weeks for a while and it worked fine) it’s not going away.
Has anyone had a similar experience? Could my body not respond to it anymore?
At this point I am thinking of trying the AIP diet and see if something changes but I’ve never had success with dietary changes before.

Ciao. Da circa 20 giorni ho una riacutizzazione molto forte. La prima. È come prima di iniziare dupixent. Sono a 4 mesi. Per una patologia di prurigo. Che il dermatologo dice essere più resistente e richiedere più tempo. Tutto è iniziato da una forte infiammazione che ho avuto il 20 luglio analisi sballate 2 giorni in pronto soccorso. Ora le analisi tutte normali. Ma la situazione non migliora. Il dermatologo diche che a 4 mesi non può perdere efficacia e la causa è stata appunto l'infiammazione forte avuta. Ho paura. Spero in qualche aiuto da parte vostra . Un abbraccio

I've been on Dupixent going on 3 years. I've never paid for it between my insurance and the Dupixent my way card. Last year, I met my deductible and my insurance covered it. When my insurance restarted in July and I refilled my prescription, it was canceled because I couldn't pay the $3500 they were requesting. After making a million phone calls between my insurance and Dupixent my way, I was told by Dupixent to unenroll from my prudence Rx (which is a program through my insurance to help save on prescriptions) so I did.

I wait a week or so and refill my prescription. Everything goes through and my Dupixent gets delivered. I thought everything was fine, but the next day I get an email about a $3500 balance! I can't afford that. So after another million phone calls, im told my Dupixent that even though I unenrolled, since I'm eligible for the program, they can't help me. So now what do I do?

These insurances literally do this stuff just to hurt us. Like why does my insurance care if Dupixent was helping me pay for my prescription! They just want to make sure no one helps out until they get their deductible.

So now I'm wondering, if I pay for it, can I submit a claim with Dupixent my way for a reimbursement? I have thousands on my Dupixent my way co pay card and I hate that they won't allow me to use it.

Dupixant arrived yesterday and the Styrofoam box was sealed, howeverrrrrrr

The cardboard prescription box of dupixant was opened inside the inner baggy and I am unsure if it was tampered with or opened due to the shifting of contents given the dry ice was all on one side. Looks like a faulty glue line but I'm so skittish about this stuff.

Any advice? Anyone else have overnight shipments that have the boxes opened ?

// Adding an image,, you can see the pens are ok I think??? Ive never had these so idk lol. But the perferation line below and the glue was loose is where it opened on the bottom

https://preview.redd.it/7wdgaled82jh1.jpg?width=4096&format=pjpg&auto=webp&s=dba714eee87311e23a709c5593344744d4e47032

I attempted to give myself my regularly scheduled dose on Monday, and I went to inject into my thigh, and the pen spring clicked but the needle never went into my leg, I don't know if something malfunctioned or if my pen was defective. Has anyone else ever ran into problems with their pens?

My medication is in my garage refrigerator. I didn't notice the power was off for 48 hrs. Is it safe to use the medication?

There is no drug interaction but do you still inject on same day/same time?