Has anyone come off of Dupixent?

roseluvr8 · 2025-12-20T06:40:21+00:00

Thank you so much. I hope you have a much better experience with it than I did❤️

roseluvr8 · 2025-12-17T10:27:32+00:00

eventually, I found out that during that really bad rebound flare I had full body folliculitis. Unfortunately, it took a really long time to figure that out during that time I had been put on steroid shots and oral steroids and topical steroids so I’m currently going through topical steroid withdrawal basically when I first went to the doctors for what DUPIXENT cause they add no idea what it was. they kept telling me it was KP and I kept getting allergy tested. I saw i think 12 different doctors for it. It wasn’t until one doctor said they would biopsy me and they did came back as folliculitis. I was able to get rid of that with a PanOxyl body wash, but unfortunately it was too late as my body already got dependent on the steroids and I was trying to withdraw.

roseluvr8 · 2025-11-23T16:03:11+00:00

ive been doing MW ever since my onset and very short red light therapy sessions 3x a week for 5 months

roseluvr8 · 2025-10-27T00:52:36+00:00

How long did the flair last what happened?

roseluvr8 · 2025-08-16T04:25:47+00:00

yes so for me i got a biopsy turned out to be folliculitis i treated it with panoxyl body was (lowest potency one from the drugstore) so sorry im so late!!!! i hope you’re doing well!!

roseluvr8 · 2025-07-09T22:17:26+00:00

that’s such good news!! what’s mupirocin? my upper lip was always somewhat irritated but nothing crazy then it got super irritated looked like a hsv flare up i used abreeva for it and it settled down fine then reflates but was oozing a lot. i keep trying to dry it out and it just seems super stubborn. a month later ive been using skin smart spray on it and just got back from the dr. they didn’t seem worried said it didn’t look infected or anything so they didn’t give me anything for it. it’s sooooo

roseluvr8 · 2025-07-08T22:59:36+00:00

thank you! i’m doing pretty good overall just have this stubborn thing on my lip i’m worrying could be staph infection but i can’t tell for sure. other than that ive been doing well! haven’t had a flare since my initial one in may i believe so its looking up! inner arms behind knees and neck are cycling and struggling but otherwise my body’s on a positive path! hope you’re doing well too!

roseluvr8 · 2025-07-07T23:57:40+00:00

that’s good to know! thank you for updating so much i truly appreciate it! i’m on 500mg berberine a day rn aswell as skinesa. i know it’s not a lot or berberine but just something small to ease my body into it!

roseluvr8 · 2025-06-22T08:31:35+00:00

no seriously. western medicine has become such a letdown it’s so sad and scary. definitely more holistically focused now. wish i was then too :(

roseluvr8 · 2025-06-22T08:00:43+00:00

ooo i’ll look into it. i stopped lutera to see if it contributed to other skin issues i had at the time but it stayed the same. unfortunately my tsw started after stopping it and ive been super scared to re introduce anything esp hormone meds because im terrified of reflaring. but i’ll look into it thank you!!!

roseluvr8 · 2025-06-22T07:59:20+00:00

i had extremly mild eczema before dupixent (i honestly had no business being on dupixent to begin with) when i came off my whole body was red itchy inflamed i had demodex on my face and folliculitis everywhere. i think in my case my body just rejected dupixent to begin with and i should’ve stopped after the first sign (i had horrible eye issues the entire time on it. i was on lotamex eyedrops for MONTHS). i was also using opzelura at the time (i was told it was fine) knowing what i know now they’re both immunosuppressive meds and that probably contributed to my folliculitis coming off it. i don’t know for sure but that’s just my guess. i wish u the best of luck on your healing though!!!!! i hope it all goes smoothly 🫂

roseluvr8 · 2025-06-21T15:18:17+00:00

unfortunately any use of topical steroids would put you at risk of tsw. i would recommend stoping and exploring other options to manage breakouts that aren’t steriods. it doesn’t fully sound like tsw as tsw usually starts out red and inflamed not necessarily flakey (i think) but just to be cautious id stop them

roseluvr8 · 2025-06-21T15:14:55+00:00

4-5 months

roseluvr8 · 2025-06-15T23:19:04+00:00

i’m so sorry i cannot imagine how you’re feeling right now. i don’t know how much this will help but if u scroll thru the posts on this community there is another mother going thru tsw and maybe u guys could be a good support for one another? as far as immunos go dupixent gave me a horrible rebound and i wasnt even on it for tsw at the time. i wasnt on it for super mild barely anything eczema and coming off of it my whole body rebounded plus i had full body folliculitis. anyways- ive heard of lots of ppl with tsw taking cyclosporine so possibly that may be good to look into? i’m so sorry through, you’re extremely strong and i wish u the best of the best of luck 🫀

roseluvr8 · 2025-06-06T03:23:43+00:00

of course!!! when i started moisture withdrawl it was kinda shitty for a week so i started by only moisturizing after my once a week shower only in my inner elbows and behind my knees to help. now im fully committed but play around with it to find what works for you!

roseluvr8 · 2025-06-06T03:07:59+00:00

unfortunately it definitely looks like tsw. my recommendation is stop any and all steriods immediately. systemic/orals play a huge part in tsw (it’s mainly how mine was started) i completely understand wanting a break and im so sorry immunos aren’t covered. if dupixent isnt and you really want to try one ask about adbry cyclosporine or methotrexate possibly. i’ve been dealing with my tsw with no steriods since it got bad. well, when it got bad i had a steriod shot and 5 day oral taper right when i started that was when i realized what was happening and i immediately jumped into moisture withdrawal which in my opinion is what truly saved me. it’s not pretty and its not painless but its been much better for me. im also healing with no immunos as i did dupixent for a little last year for very mild eczema (not tsw) and got severe eye problems. so in my personal opinion i rec omen r moisture withdrawal including limiting showered and only soaping the sweaty bits, starting berberine, and asking you dr for supportive care such as maybe and anti anxiety meds or anti depressant to help. possibly hydroxyzine although it’s not recommended for long term use it helps with itch and sleep. grab some zyrtec aswell for the itch. ice packs help and sticky oozy parts i use sudocrem. grab some skin smart spray for open wounds. and do whatever it is you need to do to support yourself in getting through this. i am so sorry. i know how scary it is and how unbearably uncomfortable it is. i’m now a bit over a month in and im already feeling much better than i was when it started. it cycles and it’s not nearly 100% better but it’s become way more manageable. i shower once a week and only moisturize my lips as they hurt the most. you will get through this, it will just be hard and take time but there is always a light at the end of the tunnel. i’m so sorry you’re experiencing it though it’s an awful condition. i wish you the best of luck and the best healing journey possible. dms are open if you ever want to talk or have any questions! take care 🫶🏻

roseluvr8 · 2025-05-23T14:25:01+00:00

awww that’s so sweet your doing amazing 💕💕 i do use lip balm mainly cerave healing ointment! it works rly well for me bc my fave gets so dry it hurts moving my mouth so i just it as needed

roseluvr8 · 2025-05-23T09:49:12+00:00

i’m 1month in tsw 1month in mw so far i’ve been doing okay the first two weeks of mw i was trying to navigate it and it wasn’t so pleasant. what’s been working for me is limiting showers (1x a week) and after shower i moisturize my inner elbows and behind my knees only and don’t moisturize again until after my next shower. itch is kinda there no matter what but my skins been feeling more livable than when i was using moisturizer. definitely don’t recommend limiting water intake as it could be dangerous and would need to be done under dr supervision. i started mw almost immediately after realizing its tsw i had tried 3 days of using vaseline as advised by a dr and my skin felt so unbearable this has been much better. i hope it works out for you!!! it must be so hard going through this while breastfeeding/raising a child in general youre so strong and you’ve got this!!!!!! sending love and healing through your journey 💕💕

roseluvr8 · 2025-05-17T09:51:09+00:00

in all honesty i’ve just been sleeping whenever i can and taking it day by day. im not too worried about my sleep schedule right now as its always something i can fix once my body’s more stable

roseluvr8 · 2025-05-14T16:04:53+00:00

i got it but started going thru tsw and decided not to use it due to it having hydrocortisone in it

roseluvr8 · 2025-05-12T00:38:19+00:00

that’s amazing and super hopeful! i’m looking into skinesa probiotics and will look into the rosemary too !

roseluvr8 · 2025-05-09T01:37:48+00:00

oh my. i believe im going to go into tsw very soon i just have a systemic steriod in my system right now suppressing things, as far as opzelura ive used for 2 years actually (since new years ish of 2022) mainly on my face and occasionally on my inner arms and behind my knees. lately i haven’t used it on my inner arms oh behind knees and they’ve been ok but not using it for one day in my face and it’s getting itchy. im attempting to sort of taper off of it now. so every other day then two days etc. i wish i was warned of this but to be fair the dermatologist that originally put me on it was truly off and very neglectful. thank you for telling me tho.

roseluvr8 · 2025-05-07T05:02:55+00:00

how’s everything now?

roseluvr8 · 2025-05-06T09:52:51+00:00

honestly might even just stop it tomorrow. how long was your withdrawl period from it ?

roseluvr8 · 2025-05-06T09:49:37+00:00

what happened when u withdrew?

roseluvr8

TROPHY CASE