I’m about 4 days into my loading dose of dupixent and I’m feeling relief I haven’t felt in a year. My sheets are no longer soaked in blood, I can wear a light colored shirt. I’m in the heat wave of the northeast, and I am actually able to venture outside…I’m just so so grateful. Wanted to share with everything to hang in there—fight for that RX!! It’s life changing.
After the hardest, most humbling painful six months of my life—I took my loading dose of dupixent today. I of course have seen all the videos of people screaming and writhing and have read the posts here—and was so nervous. I definitely psyched myself out but have to say it was near painless for me. I would say no more painful than a Covid vaccine. I experienced none of the burning, or injection pain at all. It’s been a half hour and I feel entirely normal. I know my experience is probably not the norm but just wanted to give a positive experience to offset all the negative ones in case someone was freaking themselves out like I was haha. Also grateful for this community, I learned so much here and I am hopeful this is the end of a painful road (not the end, I know there’s no cure—but back to a normal dry itchy elbow instead of a full body weeping flare that rendered me unable to walk.) Happiest day in a long time!
I had the loading dose today and was TERRIFIED of the pain from all the videos and posts I’ve seen. I can’t stress enough—it was a 1 in a 10 point scale. No more painful than a Covid vaccine or a flu shot. I’m not saying it’s the same for everyone, but just wanted to share a positive experience. I was sooo psyched out and it was totally easy!
My feet and hands are in an active rough flare right now and are so raw in patches that I’ve basically been doing nothing but but holding ice against them. Moisturizing with my cerave anti itch stings beyond and I’m terrified to take a shower. I would like to wash my body however so I’m wondering if anyone has some tips on how I could cover the rawest patches so I’m not in excruciating pain.
Prescribed tacrolimus as a last ditch before dupixent (mostly bc my insurance requires it)—I’m reading that most of you experience burning with it. I want to time my application so I’m not working during the burning so was wondering how quickly the burning itching sensation starts after application. Is it instantaneous or does it appear later?
I have an autoimmune disorder that this year has reared its ugly head and my body is 80% covered in severe eczema. My skin hasn’t been clear since January and I’ve had multiple flares that were so bad that I was unable to walk because my feet were so disfigured. My body is in constant pain and I’ve basically tried every steroid pill and cream that exists except apparently one. My dermatologist prescribed me Dupixent, and of course, UHC denied me. My doctor called me apologetically last night while I literally wept on the phone and told me he had to put me back on prednisone and prescribe me another topical cream that in his words—simply will not work for how severe my case is. He told me to use it and call him back next week when it undoubtedly doesn’t work and he’ll re-file for me to get dupixent, but UHC is demanding I try this. I cried all night, woke up this morning, went to cvs to get my prednisone and cream that UHC is demanding I try before giving a medication I need….and found out that UHC won’t pay for either of these until AUGUST because they’ve already paid for prednisone and another topical cream too recently. I paid out of pocket for the prednisone as it was like 20 bucks, but the cream was 800 dollars for the size I needed. The sweet pharmacy tech helped me find some coupons and I left with a tiny tube of the ointment that I was supposed to get a full lb jar of as my entire body is covered in weeping, painful rashes. I am devastated beyond and the toll this has taken on me is unbelievable. My life is just working remotely and holding ice packs against my body and praying that another flare doesn’t render me disabled again. I used to be one of those obnoxious pro business, nasty capitalists. I have been humbled. This corporation is evil. Idk how these execs sleep at night.
I am in my mid thirties and since December have been battling an unknown autoimmune disorder. I had a brutal upper respiratory infection for months, my body is 70% covered in eczema, my feet and hands completely inhuman looking with dyshidrotic eczema, nightly hives, the inability to climb the subway stairs without having to rest and use an inhaler. It has taken my life from me. I am unable to eat foods I enjoy, have sex, go out, drive or live a normal life. Sometimes my joints are so swollen I cannot brush my own hair or write my name. The anger I feel towards myself is beyond. I did not care for myself before this. I lived a very high stress life, poor diet, heavy drinker and cocaine user for years. I slept odd hours, had unprotected sex and was just generally a kind of party girl loser for most of my life. I can’t help but think those behaviors are what caused this. Does anyone else feel this way?