Dealing with Neurodermatitis

So, yeah... using stuff like Elocom isn't exactly the brightest move... or honestly, any corticosteroids for that matter. The side effects can be pretty wild—we're talking stretch marks everywhere, skin issues, all that good stuff. I actually ended up in the hospital a few years back because I developed stretch marks all over my body in just three months. Plus, I don't sweat at all, and I didn't even get my period until I was 15, so those types of creams basically just shut down certain hormones in your system.

For my body, I just stick to Nivea lotion; it works wonders for me. As for my face, my dermatologist mixes up a custom cream just for me.

quietbear29 said:I've got ichthyosis myself. It's honestly so annoying when people stare... just makes you want to lose it, ya know? -.-' But eventually, you just kind of get used to it x)) .. Ugh, for my face I use this ointment, though it feels a bit heavy in the summer so I swap it out for a Garnier cream for super dry skin .. For my body, I swear by CeraVe 10% Urea Lotion and it's seriously awesome.. it actually works .. there you go..

so how old are you? and when did the ichthyosis first show up?

does that Garnier cream actually keep your face hydrated enough to last all day? also, what’s your skin type like—for both your face and your body? personally, my face gets super red, so I usually just cover it up with foundation.
I tried those CeraVe creams too, plus all those fancy expensive brands, but I eventually realized that Nivea cream and the Nivea Rice & Lotus lotion are actually my best bets. I just slather it on in the morning after my shower and again at night after my bath.

I’ve spent a ridiculous amount of money on these creams, but in the end, my skin still wasn't staying moisturized through the whole day.

rowdydriver11 said:So, yeah... using stuff like Elocom isn't exactly the brightest move... or honestly, any corticosteroids for that matter. The side effects can be pretty wild—we're talking stretch marks everywhere, skin issues, all that good stuff. I actually ended up in the hospital a few years back because I developed stretch marks all over my body in just three months. Plus, I don't sweat at all, and I didn't even get my period until I was 15, so those types of creams basically just shut down certain hormones in your system.

For my body, I just stick to Nivea lotion; it works wonders for me. As for my face, my dermatologist mixes up a custom cream just for me.

This is the first I've heard about the issues with Elocom and Belogent. My primary care doctor prescribed the Elocom, and a dermatologist gave me the Belogent.🤷

Justin Martinez3 said:This is the first I've heard about the issues with Elocom and Belogent. My primary care doctor prescribed the Elocom, and a dermatologist gave me the Belogent.🤷

Yeah, I’m right there with you on that. But seriously, just be careful with those things—don't go overboard or overdo it... you don't want to end up dealing with the same mess I'm stuck with right now...

That sounds like a total nightmare, what you’re describing... what does that actually look like in practice? Like, how does it manifest?

rowdydriver11 said:That sounds like a total nightmare, what you’re describing... what does that actually look like in practice? Like, how does it manifest?

Hmm, how should I put this? You know that thing where those tiny patches of eczema flare up—it itches so badly it's driving me absolutely insane 🙄 and when I can't help myself, I scratch until I'm bleeding. Then, boom, you've got these little raw wounds all over my arms. I guess to most people it looks pretty gross—like, "ew, don't look" territory—but I've just gotten used to it at this point. 🤷

I’m trying my best to stay on top of it, though, and I try to avoid using those steroid creams whenever possible.
I have noticed that since I started sleeping on an anti-allergy mattress, one area has actually cleared up. It isn't as widespread as it used to be, but instead, it just shifts—like I've somehow glued the eczema to a different spot on my body.

Has anyone here tried using an ointment instead of corticosteroids? 😉

I’ve spent some time scouring the web for answers—and frankly, I can tell you, the results are nothing short of appalling. If you want actual relief, you might want to try CeraVe 10% Urea Lotion; it truly works wonders.

jadehound9 said:I’ve spent some time scouring the web for answers—and frankly, I can tell you, the results are nothing short of appalling. If you want actual relief, you might want to try CeraVe 10% Urea Lotion; it truly works wonders.

My doctor actually recommended CeraVe with 5% Urea, but she only told me to use it on my hands during the winter months.😕

Justin Martinez3 said:My doctor actually recommended CeraVe with 5% Urea, but she only told me to use it on my hands during the winter months.😕

But I can say without a shadow of a doubt that it actually works; I know, because I’ve lived through it myself.

Hey everyone, I found myself scrolling through these threads and figured I’d share my experience with neurodermatitis. I’ve dealt with this since birth. My mom practically lived to save me when I was little; she tried everything, keeping the house spotless 24/7 because dust just makes it worse. After seeing a hundred different doctors, I eventually found my own remedy—oak bark from a local pharmacy. You soak it in water for about six hours, boil it, and then apply the bark-soaked cotton to the eczema patches.
It’s a tough battle against this kind of skin condition triggered by neurological issues.
I’m 21 now, and unlike when I was a baby, things are actually pretty good. Like someone else mentioned earlier, the creases of my arms and legs were always the worst spots for me, but I haven't had major issues in at least ten years. Some doctors claim you can outgrow neurodermatitis if you've had it since childhood. Of course, the biggest trigger for a flare-up is stress... ugh. But right now, I have a specific problem I don't know how to fix.
For the last two years, I've been struggling with extremely dry skin around my mouth. As soon as winter hits and the weather turns cold, my lips start begging for ointment or Chapstick. Lately, it’s gotten so bad it's driving me crazy. The area around my mouth is red, and I can barely move my lips properly—it feels like I've lost half my mobility, if you know what I mean. I’m asking for advice if anyone has dealt with something similar, because I think it’s part of my neurodermatitis. I've tried every cream under the sun... I can't even remember all the names. Everything from CeraVe to basic ointments, Chapstick, various herbal rinses before bed, balms, you name it. Help!! 😢

Ronald Chase2 said:Hey everyone, I found myself scrolling through these threads and figured I’d share my experience with neurodermatitis. I’ve dealt with this since birth. My mom practically lived to save me when I was little; she tried everything, keeping the house spotless 24/7 because dust just makes it worse. After seeing a hundred different doctors, I eventually found my own remedy—oak bark from a local pharmacy. You soak it in water for about six hours, boil it, and then apply the bark-soaked cotton to the eczema patches.
It’s a tough battle against this kind of skin condition triggered by neurological issues.
I’m 21 now, and unlike when I was a baby, things are actually pretty good. Like someone else mentioned earlier, the creases of my arms and legs were always the worst spots for me, but I haven't had major issues in at least ten years. Some doctors claim you can outgrow neurodermatitis if you've had it since childhood. Of course, the biggest trigger for a flare-up is stress... ugh. But right now, I have a specific problem I don't know how to fix.
For the last two years, I've been struggling with extremely dry skin around my mouth. As soon as winter hits and the weather turns cold, my lips start begging for ointment or Chapstick. Lately, it’s gotten so bad it's driving me crazy. The area around my mouth is red, and I can barely move my lips properly—it feels like I've lost half my mobility, if you know what I mean. I’m asking for advice if anyone has dealt with something similar, because I think it’s part of my neurodermatitis. I've tried every cream under the sun... I can't even remember all the names. Everything from CeraVe to basic ointments, Chapstick, various herbal rinses before bed, balms, you name it. Help!! 😢

Vaseline, always and forever... you can grab a tub at Walgreens for like $3.00... I deal with the exact same thing all year round, where I get those annoying little flakes all along the edges of my lips and stuff...

Justin Martinez3 said:Hmm, how should I put this? You know that thing where those tiny patches of eczema flare up—it itches so badly it's driving me absolutely insane 🙄 and when I can't help myself, I scratch until I'm bleeding. Then, boom, you've got these little raw wounds all over my arms. I guess to most people it looks pretty gross—like, "ew, don't look" territory—but I've just gotten used to it at this point. 🤷

I’m trying my best to stay on top of it, though, and I try to avoid using those steroid creams whenever possible.
I have noticed that since I started sleeping on an anti-allergy mattress, one area has actually cleared up. It isn't as widespread as it used to be, but instead, it just shifts—like I've somehow glued the eczema to a different spot on my body.

Has anyone here tried using an ointment instead of corticosteroids? 😉

Yeah, I do the exact same thing where I scratch myself until I bleed. I've got an allergy-proof mattress too...
but I don't know if it's the same for you... basically, if my arms are tucked under the covers, the itching is just catastrophic... it always happens when my skin is trapped in the heat without any airflow...
For stuff like that, fish oil ointment actually helps me out; I usually just slather it on before bed and wash the smell off with soap in the morning.

Btw, has anyone here ever been to the Mayo Clinic in Rochester??

rowdydriver11 said:Vaseline, always and forever... you can grab a tub at Walgreens for like $3.00... I deal with the exact same thing all year round, where I get those annoying little flakes all along the edges of my lips and stuff...

Thanks so much for the help!! I went to Walgreens yesterday, there are two in my town, but they were out of stock, so I'll hit the other one on Monday... I haven't tried it yet, but I'm sure it helps. 🙂 Usually, what works best for me is just a basic dark blue Chapstick 😲 overnight and things get way better...

PS—recently, a post from a girl on this forum from about six months ago actually helped me through a rough patch. She mentioned having the exact same lip issues and turned out to be allergic to nail polish 😲!!! I didn't think much of it, but since I stopped wearing it (I've been using clear polish almost constantly for the last week), the improvement is unbelievable! Maybe more expensive brands like Maybelline, Nivea, or Victoria's Secret don't include them, but this cheap stuff I got at Walgreens had two ingredients I looked up online that I want to warn everyone about—TOLUENE and BUTYL BENZYL PHTHALATE! These phthalates are really bad for your skin. If you remember those Chinese toys the media called "killer toys," they contained all sorts of phthalates...

Thanks again!!!

...so, quick question for you all: I just got back from the dermatologist with my sister-in-law, and honestly, the doctors seemed pretty baffled by what they saw on my little one's skin—it looks kind of like these patches that resemble passing scabs or something. Their initial diagnosis was hyperkeratosis and ichthyosis... and the treatment plan they suggested is basically just applying olive oil and Vaseline. I was wondering if anyone here has dealt with this kind of thing in their kids? Does anyone have any experiences, advice, or maybe just some thoughts to share??

driftingcobra7 said:...so, quick question for you all: I just got back from the dermatologist with my sister-in-law, and honestly, the doctors seemed pretty baffled by what they saw on my little one's skin—it looks kind of like these patches that resemble passing scabs or something. Their initial diagnosis was hyperkeratosis and ichthyosis... and the treatment plan they suggested is basically just applying olive oil and Vaseline. I was wondering if anyone here has dealt with this kind of thing in their kids? Does anyone have any experiences, advice, or maybe just some thoughts to share??

well, nothing much to add really... honestly, you should just stick to what the doctors are telling you. Vaseline is actually a lifesaver for skin like that. You could even try milk baths—like, just toss about a quart of milk into a standard bathtub full of water... it usually helps soften everything up quite a bit. Also, if I can suggest something, grab some calendula ointment; you can find it pretty much everywhere, even at Walgreens (look for the Melkfett Ringelblume stuff). It’s usually around $3.00 for a
pack, maybe 5 or 6 ounces.
so, what does the kiddo's skin actually look like?

For my ichthyosis, I apply glycerin right after showering. While I'm using it, the condition seems to subside, but as soon as I stop, it returns... It’s the exact same pattern for my two brothers, too.

rowdydriver11 said:Hey there... I was wondering if anyone here has had any real-world experience dealing with ichthyosis or neurodermatitis? I'm curious about how people actually react to it—like, how does the public generally view or perceive someone living with those kinds of skin conditions? Have you ever run into awkward situations or faced any friction with people because of it? Also, just wondering how you all manage the day-to-day struggle and what your go-to treatments are...

I have ichthyosis too. I've been using Desitin since I can remember, but lately, I've switched to La Roche-Posay lotion. It’s actually pretty good; makes my skin feel more flexible. As for dealing with people, I guess it just depends on the individual. Middle school was probably the hardest part for me, but once I hit high school, people didn't really pay much attention.

quietbear29 said:I've got ichthyosis myself. It's honestly so annoying when people stare... just makes you want to lose it, ya know? -.-' But eventually, you just kind of get used to it x)) .. Ugh, for my face I use this ointment, though it feels a bit heavy in the summer so I swap it out for a Garnier cream for super dry skin .. For my body, I swear by CeraVe 10% Urea Lotion and it's seriously awesome.. it actually works .. there you go..

I have ichthyosis too... and yeah, I get the peeling part. 😁But my treatment plan is totally different from yours. If what you're doing actually works, maybe I'll try switching over. Thanks anyway.👍

rowdydriver11 said:so how old are you? and when did the ichthyosis first show up?

does that Garnier cream actually keep your face hydrated enough to last all day? also, what’s your skin type like—for both your face and your body? personally, my face gets super red, so I usually just cover it up with foundation.
I tried those CeraVe creams too, plus all those fancy expensive brands, but I eventually realized that Nivea cream and the Nivea Rice & Lotus lotion are actually my best bets. I just slather it on in the morning after my shower and again at night after my bath.

I’ve spent a ridiculous amount of money on these creams, but in the end, my skin still wasn't staying moisturized through the whole day.

My skin is red too, but that's from the ichthyosis... I'm 18 now and can say it's getting better, but you still have to moisturize every few hours... personally, I do it after every class at school.

I’m dealing with a massive issue—constant itching around my groin, backside, and inner thighs. I’ve always had dry skin and an overall itchy body, but this specific flare-up started about two years ago. My doctor didn't take it particularly seriously—just brushed it off as neurodermatitis—and prescribed Afloderm. It helps, sure, but the constant feeling of being greasy and slimy is revolting. The itch can be unbearable, often waking me up in the middle of the night. And of course, the scratching just leaves me with a nasty rash—it’s a total disaster. Anyone have any actual advice?