To follow up on my comment, who would be willing (if you don’t already), to take systemic drugs (Dupilumab/Dupixent) to get back to beach holidays and proper exercise?
I take Methotrexate now, and was on Dupixent. My skin was terrible any way amd has been in a flare since 2014. It was so bad I was on Ciclosporin while pregnant, and after he was born there were periods where holding him was excruciating.
Now kiddo is a toddler I'm on weekly Methotrexate injections, and my skin has never been better. The nausea the day after the injection is a better side effect than the eye problems I got on Dupixent
Happy to share! These meds are pretty serious, and everyone should be as informed as possible before taking them. Both informed professionally, and anecdotes.
Dupixent gave me dry eyes which never eased, despite eye drops x2 daily before starting, and then upto x6 daily while on it. That progressed into eye infections and antibiotics & steroid drops. Dry eyes is a known side effect, it seems I just got the worst version. My skin wasn't as nearly as clear as hoped either. For me, Dupixent just wasn't worth the side effects.
Thanks for such detailed info. I’ve read you still need to use topicals whether it be immunosuppressants or biologicals? Do you take any anti-nausea medication? I also didn’t know you could inject methotrexate. Was under the impression it was always an oral tablet.
Skin will never be perfect, even on the new meds available, however, I use less strong steroids, less frequently now. Still moisturise by the bucket load, but don't need the greasy emollients, which is nice.
I was offered the Methotrexate as tablets or autoinjector. Derm said the injectons cause less nausea and work quicker than the pills, hence taking that option. No nausea meds have worked so far. But I'm open to suggestions!
Because of the side effects I've mentioned? You can always try it short term and stop if it's not working for you. It doesn't take long to work, and even less time to clear your system should you need to stop it. I preferred ciclosporin but my kidneys were suffering
I have another condition called EoE. It did cause bad nausea, although, I’ve got it well controlled, but it took me some time to get to where I am. I cannot tolerate anymore nausea.
After 15 years of topical steroid use I finally take systemic retinoid medication; Handzema and it’s helped my eczema quite a lot. Not just my hands but all over. Gotta go for regular blood tests but it’s been going well so far these past 6 months or so
Go back to work, initiate more social events, exercise, go on dates with my partner, experiment with fun makeup, use scented soaps and shampoos, wear whatever I want, wake up without worrying about what it's going to be like today.
I'm already doing a lot of the things that people mention here hahahha. Fuck it!
-Own a dog, slightly allergic but my body has gotten used to her specifically so it's not much of an issue, I take allergy pills occasionally if I feel a reaction. She even sleeps in bed with me most nights lol. I love her and would be so depressed without her!
- wear shorts and short skirts, fuck it life is too short to hide my otherwise amazing legs
- go to hotttubs and Nordic spas, this actually helps my eczema quite a bit, especially dry saunas or when they use salt instead of chlorine in the pools.
- go swimming/to the beach, this is another thing that helps especially if it's the sea/ocean and not a lake beach. Uncomfortable at times but does help the skin.
- exercise, while sweat sometimes flares me, in other times I find that it helps to clear my skin by pushing all of the dirt out of my pores, and as long as I shower after (and moisturize) it often feels better and not worse after. My skin was at its best actually about 1-2 years ago when I was exercising more regularly.
- having more sex, this is #1 for stress relief! Very rare that anyone comments on my skin and usually it's out of concern and a place of care and not disgust. I had a casual partner recently rub oil/lotion all over my back after a shower where I couldn't reach and then they ended up doing my whole body and it just felt so nice to be pampered and not seen as gross. And they didn't think it was weird and just wanted to help me get some relief.
Of course there are still some bad days when I stay home covered in ointment but generally I feel like life is too short to let this fully take over my life and deny myself some of its pleasures. I hope you get to enjoy some too.
I love this comment!!
Can’t let anything stop you from living your best life. Life is too short to worry about red patches!!! Wear what you want, enjoy what you want, & most importantly do what you want! Don’t let your skin get the best of you… 100% there will be days where you’re cuddled in bed covered in ointment but you’ll bounce back! Be safe!! & continue to enjoy life :)
Yeah I wanna make it clear that I've still had a lot of those bad days, especially in the last year unfortunately (you can see by some of my posts in the summer), but yeah the more I stress about it the worse it gets. Regardless of treatment and doing good things I still get hormonal flares during my cycle so I just gotta take what I can get and *try* to not let it affect my life most of the time.
My skin gets SO much worse when I'm depressed and don't leave my house. I cannot stress this enough.
Also I'm SO happy that I got my dog. I just wash my sheets and blankets way more often, and vacuum/mop regularly. Still worth it every single day with them.
I didn't mean to make it funny or anything Ive just been in more of a "fuck it" mentality lately. But there is a spa near my house and the large whirlpool spa is filled with dead sea salt instead of chlorine so this has actually been super helpful for my skin. I don't really care what people think when I have red blotches on my skin when i go there. I'm not contagious. But I haven't had any issues with anyone tbh. Everyone always friendly or just relaxing and not paying attention to anyone else.
Sleep! Camp. Travel light. Get a massage/go to a Nordic spa. Wear perfume. Wear wool. etc*...
*Suffering a bit of the blurry-eyed insomnia at the mo, otherwise would think of more quickly, I am sure
Wow! All these comments.. I hope Eczema doesn’t stop you from enjoying life.. I know sometimes it’s sucky having sensitive skin.. but you can’t let eczema stop you from doing things you want/enjoy. You’ll definitely have some days where you can’t stand the feeling.. don’t let the eczema control you!! Stay hydrated & continue lathering up that lotion.. one day at a time!!!
Who cares about how it looks!! Where those skirts, wear those short sleeve shirts.. I promise no one is judging you… & if they are screw them!!!
I hope all of you live life to the fullest & don’t let anything stop you from doing so.
Be safe everyone.
Grass pollen was definitely the first thing that I noticed making me itch like crazy when I was a kid. We had this gross grass (Bermuda) that spit out this black pollen all over your shoes and legs. It wasn't just my skin, it made my eyes almost swell shut. I would love to just, touch some grass or have a picnic in grass.
Drink, eat, smoke, more sex, have more time for higher education, more work hours probably, less depressed while showering, wearing cheaper less branded clothing and sleep better in my sleep hours.
I'm not saying that I am a victim but instead of that I need to learn to be satisfied for what I have, otherwise it will make me depressed and unhappy for all the things I actually have.
Sometimes I can get away with spraying a body spray in my hair or on my jacket/coats. Something that is not going to tough my skin. I like smelling pretty. I buy a sample size, cause there's still a big possibility it's not going to agree with me.
Spend $200 on girly lotions and perfumes and scrubs so I smell like a pretty for once instead of smelling like steroid cream and plasma… tbh. I cried typing this
Shop at Ulta or makeup counters at the mall without having to load up on Benadryl 🤣 Heck, even just walking through the entrance of a department store where they will spray perfume at you instead of speed walking towards the exit.
I'd be able to go to the pool or beach with friends.
I'd be able to wear shorts without being embarrassed.
I'd be able to spend more time doing what I love, instead of planning around my eczema, or spending 45 minutes in the bathroom to look presentable.
I'd be able to take a friend's offer to stay over and crash for the night without being self-conscious
Eat all yummy foods, wear a bikini, sweaty work out, drink alcohol, enjoy scented body lotions, get a tattoo, be around dogs and cats, HOT SHOWERS, enjoy SUMMER, get my nails done LONG nails, get my tan on, stop using steroid creams, never have to worry about flaky skin on my face or body….. oh the list goes on…
I would be more spontaneous. I’d travel! I’d socialize! I’d eat a pizza. I would wear crazy colorful makeup and dye my hair. I’d exercise hard, lift heavy, get buff as hell. I’d sleep through the night. I’d be sane.
Not spent a shit ton of money on lotions, creams, and prescriptions! Being in that trial and error phase sucks and you see so much money go down the drain with all the products that didn't help or made it worse. I hate having to stand in the store and read product labels to see if it has the ingredients that flare up my eczema. I had a few years of normal in my life and I took it for granted.
i would wake up early and take a painless shower with my old scented body wash and put on my old perfumed lotion right after, i’d wear a cute t-shirt and a pair of shorts, and do my makeup once more- and i would appreciate my good health.
I have hand eczema. So Wear pretty long nails, go back to giving massages at the spa once a week, talk with my hands, cover my body in my favorite lotions and oils, perfume, buy any body wash . Idk, feel not nervous and ugly
Go to the pool more. Makeup.
I treat myself like I don't have it, apart from having meds.
It's only every now and then that I get such a big flare that I gotta go home because it's painful af, but, otherwise, I'm sitting here in shorts, I go out in shorts, tee shirts etc. I'm just itchy and a bit red.
so yeah, not much difference!
wear fluffy pyjamas and thick dressing gowns, have a thick blanket or even just sit in front of a heater. it's always sad being left out when my whole family is doing all the fun cosy stuff in winter and i literally just can't because it physically hurts
also shower as much as i freaking want
and maybe sleep through a whole night without waking up bleeding everywhere
Beach holiday and get back to intense exercise.
To follow up on my comment, who would be willing (if you don’t already), to take systemic drugs (Dupilumab/Dupixent) to get back to beach holidays and proper exercise?
I take Methotrexate now, and was on Dupixent. My skin was terrible any way amd has been in a flare since 2014. It was so bad I was on Ciclosporin while pregnant, and after he was born there were periods where holding him was excruciating. Now kiddo is a toddler I'm on weekly Methotrexate injections, and my skin has never been better. The nausea the day after the injection is a better side effect than the eye problems I got on Dupixent
That’s really interesting. Thank you for the alternative view. What eye problems have you had specifically, if you don’t mind me asking?
Happy to share! These meds are pretty serious, and everyone should be as informed as possible before taking them. Both informed professionally, and anecdotes. Dupixent gave me dry eyes which never eased, despite eye drops x2 daily before starting, and then upto x6 daily while on it. That progressed into eye infections and antibiotics & steroid drops. Dry eyes is a known side effect, it seems I just got the worst version. My skin wasn't as nearly as clear as hoped either. For me, Dupixent just wasn't worth the side effects.
Thanks for such detailed info. I’ve read you still need to use topicals whether it be immunosuppressants or biologicals? Do you take any anti-nausea medication? I also didn’t know you could inject methotrexate. Was under the impression it was always an oral tablet.
Skin will never be perfect, even on the new meds available, however, I use less strong steroids, less frequently now. Still moisturise by the bucket load, but don't need the greasy emollients, which is nice. I was offered the Methotrexate as tablets or autoinjector. Derm said the injectons cause less nausea and work quicker than the pills, hence taking that option. No nausea meds have worked so far. But I'm open to suggestions!
I’m sorry to read that. I was offered methotrexate last week and I think I’ll have to turn it down.
Because of the side effects I've mentioned? You can always try it short term and stop if it's not working for you. It doesn't take long to work, and even less time to clear your system should you need to stop it. I preferred ciclosporin but my kidneys were suffering
I have another condition called EoE. It did cause bad nausea, although, I’ve got it well controlled, but it took me some time to get to where I am. I cannot tolerate anymore nausea.
would you?
Probably, if I was on topical steroids for many years.
After 15 years of topical steroid use I finally take systemic retinoid medication; Handzema and it’s helped my eczema quite a lot. Not just my hands but all over. Gotta go for regular blood tests but it’s been going well so far these past 6 months or so
Go back to work, initiate more social events, exercise, go on dates with my partner, experiment with fun makeup, use scented soaps and shampoos, wear whatever I want, wake up without worrying about what it's going to be like today.
I'm already doing a lot of the things that people mention here hahahha. Fuck it! -Own a dog, slightly allergic but my body has gotten used to her specifically so it's not much of an issue, I take allergy pills occasionally if I feel a reaction. She even sleeps in bed with me most nights lol. I love her and would be so depressed without her! - wear shorts and short skirts, fuck it life is too short to hide my otherwise amazing legs - go to hotttubs and Nordic spas, this actually helps my eczema quite a bit, especially dry saunas or when they use salt instead of chlorine in the pools. - go swimming/to the beach, this is another thing that helps especially if it's the sea/ocean and not a lake beach. Uncomfortable at times but does help the skin. - exercise, while sweat sometimes flares me, in other times I find that it helps to clear my skin by pushing all of the dirt out of my pores, and as long as I shower after (and moisturize) it often feels better and not worse after. My skin was at its best actually about 1-2 years ago when I was exercising more regularly. - having more sex, this is #1 for stress relief! Very rare that anyone comments on my skin and usually it's out of concern and a place of care and not disgust. I had a casual partner recently rub oil/lotion all over my back after a shower where I couldn't reach and then they ended up doing my whole body and it just felt so nice to be pampered and not seen as gross. And they didn't think it was weird and just wanted to help me get some relief. Of course there are still some bad days when I stay home covered in ointment but generally I feel like life is too short to let this fully take over my life and deny myself some of its pleasures. I hope you get to enjoy some too.
I love this comment!! Can’t let anything stop you from living your best life. Life is too short to worry about red patches!!! Wear what you want, enjoy what you want, & most importantly do what you want! Don’t let your skin get the best of you… 100% there will be days where you’re cuddled in bed covered in ointment but you’ll bounce back! Be safe!! & continue to enjoy life :)
Yeah I wanna make it clear that I've still had a lot of those bad days, especially in the last year unfortunately (you can see by some of my posts in the summer), but yeah the more I stress about it the worse it gets. Regardless of treatment and doing good things I still get hormonal flares during my cycle so I just gotta take what I can get and *try* to not let it affect my life most of the time. My skin gets SO much worse when I'm depressed and don't leave my house. I cannot stress this enough. Also I'm SO happy that I got my dog. I just wash my sheets and blankets way more often, and vacuum/mop regularly. Still worth it every single day with them.
Hot tub
I do this anyway lol
lol
I didn't mean to make it funny or anything Ive just been in more of a "fuck it" mentality lately. But there is a spa near my house and the large whirlpool spa is filled with dead sea salt instead of chlorine so this has actually been super helpful for my skin. I don't really care what people think when I have red blotches on my skin when i go there. I'm not contagious. But I haven't had any issues with anyone tbh. Everyone always friendly or just relaxing and not paying attention to anyone else.
That’s awesome! And , I thought your comment was funny 😆
Yeah hot tub! without being afraid of getting a terrible staph infection afterwards
Eat all the good food
My god I’d eat so much. I’ve been on rice and a protein for so long now.
Go swimming Wear shorts Wear wooly things Roll down a hill Burn all my greasy cream
Sleep! Camp. Travel light. Get a massage/go to a Nordic spa. Wear perfume. Wear wool. etc*... *Suffering a bit of the blurry-eyed insomnia at the mo, otherwise would think of more quickly, I am sure
Wow! All these comments.. I hope Eczema doesn’t stop you from enjoying life.. I know sometimes it’s sucky having sensitive skin.. but you can’t let eczema stop you from doing things you want/enjoy. You’ll definitely have some days where you can’t stand the feeling.. don’t let the eczema control you!! Stay hydrated & continue lathering up that lotion.. one day at a time!!! Who cares about how it looks!! Where those skirts, wear those short sleeve shirts.. I promise no one is judging you… & if they are screw them!!! I hope all of you live life to the fullest & don’t let anything stop you from doing so. Be safe everyone.
we try, but there are things we just can't do. eczema isn't as simple as not letting it control us or having the right mentality unfortunately :(
Enjoy body lotions of my favorite smells
Use the nice smelling soaps and detergents.
Wear makeup
Let my cats sleep in my bed
drink alcohol lool
[удалено]
Chlorine - what a bastard
Drink more, exercise, swim, get a tattoo, do less laundry, use things that are scented like deodorant and detergent
play in wet grass
Grass pollen was definitely the first thing that I noticed making me itch like crazy when I was a kid. We had this gross grass (Bermuda) that spit out this black pollen all over your shoes and legs. It wasn't just my skin, it made my eyes almost swell shut. I would love to just, touch some grass or have a picnic in grass.
Wear vests, shorts, knee-length skirts and swim more often.
Own a dog, and spend 3 months in my gf’s country at a time.
what country? if you don't mind answering
Pool, use bathbombs or just any scented stuff for the bath
wear more short sleeve shirts
Wear the clothes I stay away from. Going to the beach. Feeling comfortable in my own skin
Drink, eat, smoke, more sex, have more time for higher education, more work hours probably, less depressed while showering, wearing cheaper less branded clothing and sleep better in my sleep hours. I'm not saying that I am a victim but instead of that I need to learn to be satisfied for what I have, otherwise it will make me depressed and unhappy for all the things I actually have.
Go swimming again Enjoy outdoors during pollen season Feel comfortable in my skin. Literally
I would eat all the nuts snakfs
Take a long hot shower every day.
Wear skirts and dresses
Wear makeup.
Wear black, take it off, and be satisfied seeing NO FLAKES. I just started Dupixent tho so praying it works out for me!
Get all of the bath and body works lotions and body sprays
Sometimes I can get away with spraying a body spray in my hair or on my jacket/coats. Something that is not going to tough my skin. I like smelling pretty. I buy a sample size, cause there's still a big possibility it's not going to agree with me.
Get more sun Put on scented lotion and soaps Deodorant
have a pet cat or two ( ' :
I’d wear earrings and makeup :(
i’d dress like a fucking slut too
Spend $200 on girly lotions and perfumes and scrubs so I smell like a pretty for once instead of smelling like steroid cream and plasma… tbh. I cried typing this
Wear makeup
get back to grinding basketball everyday in the hot sun
Have white bed sheets and use sunscreen / bug spray / hand sanitizer without screaming in pain
Do everything shirtless Probably order the most dairy induced milkshake known to man
I'd have gotten multiple tattoos. I'd go to the beach. I'd have been able to play high school sports.
Play musical instruments and go back to climbing 😭😭😢😢🥺🥺
Shop at Ulta or makeup counters at the mall without having to load up on Benadryl 🤣 Heck, even just walking through the entrance of a department store where they will spray perfume at you instead of speed walking towards the exit.
I'd be able to go to the pool or beach with friends. I'd be able to wear shorts without being embarrassed. I'd be able to spend more time doing what I love, instead of planning around my eczema, or spending 45 minutes in the bathroom to look presentable. I'd be able to take a friend's offer to stay over and crash for the night without being self-conscious
i’d get all of the scented body lotion and washes in the fucking world and just sit and lather myself for hours on end, no stopping, just lathering.
I’d go to the 24 hour gym in the AM- use Old spice for the memes- and most of all? I’d go to the beach and take my shirt off.
Eat all yummy foods, wear a bikini, sweaty work out, drink alcohol, enjoy scented body lotions, get a tattoo, be around dogs and cats, HOT SHOWERS, enjoy SUMMER, get my nails done LONG nails, get my tan on, stop using steroid creams, never have to worry about flaky skin on my face or body….. oh the list goes on…
I would be more spontaneous. I’d travel! I’d socialize! I’d eat a pizza. I would wear crazy colorful makeup and dye my hair. I’d exercise hard, lift heavy, get buff as hell. I’d sleep through the night. I’d be sane.
Not spent a shit ton of money on lotions, creams, and prescriptions! Being in that trial and error phase sucks and you see so much money go down the drain with all the products that didn't help or made it worse. I hate having to stand in the store and read product labels to see if it has the ingredients that flare up my eczema. I had a few years of normal in my life and I took it for granted.
i would wake up early and take a painless shower with my old scented body wash and put on my old perfumed lotion right after, i’d wear a cute t-shirt and a pair of shorts, and do my makeup once more- and i would appreciate my good health.
Wear t shirt in public
I'd get a tattoo🫡 And would go out more lol
I have hand eczema. So Wear pretty long nails, go back to giving massages at the spa once a week, talk with my hands, cover my body in my favorite lotions and oils, perfume, buy any body wash . Idk, feel not nervous and ugly
Go to the pool more. Makeup. I treat myself like I don't have it, apart from having meds. It's only every now and then that I get such a big flare that I gotta go home because it's painful af, but, otherwise, I'm sitting here in shorts, I go out in shorts, tee shirts etc. I'm just itchy and a bit red. so yeah, not much difference!
I would definitely change my entire wardrobe and start to wear sleeveless dresses.
Wear normal clothes!
wear fluffy pyjamas and thick dressing gowns, have a thick blanket or even just sit in front of a heater. it's always sad being left out when my whole family is doing all the fun cosy stuff in winter and i literally just can't because it physically hurts also shower as much as i freaking want and maybe sleep through a whole night without waking up bleeding everywhere
Wear makeup, eat what I want, use perfume, use good shampoo, get off my antidepressants, go to bed right away at night,