ok, i'm gonna talk about topical steroid withdrawal, or red skin syndrome. if you don't know what this is, and if you regularly use steroids, regularly apply them to someone else, or have maybe only used them once for that matter, please use my experience to prevent it from ever happening to you. i'm not a doctor, but i know what i went through, and doctors are the reason this happened to me. i experienced this a while ago, and thankfully knowledge of this condition is more common now in the medical field. this is just my story, for the sake of broader awareness.
i started to get small patches of eczema when i was 13. normal kid stuff, small itchy patches on my arms. no big deal, i was given a prescription topical steroid. doctors told me i would probably outgrow eczema, but steroids will help and to use them as needed, ideally no more than a couple times a week. they helped, life moved on. i used them every couple weeks, sometimes slightly less or more frequently. never more than a couple times a week. occasionally i could go months without using them at all.
fast forward, i'm 18. my eczema is still there, and seems to be spreading, and growing in intensity. i'm using the steroids more regularly. at one point it seemed to be so severe i went to an urgent care clinic, wondering if this was not eczema anymore. doctor examined me for maybe a few seconds. i wasn't given a diagnosis, but was told to take an over the counter steroid this time - hydrocortizone. no warnings, no direction on usage or frequency. no additional diagnosis, even though this barely feels or looks like eczema anymore.
19, and it's not getting better. i went to multiple doctors of different specialties. they tested me for a few common skin allergies, came back negative. they shrugged. i was blown off repeatedly and told to keep using my steroids. i received no further direction.
2016, i'm 20. my skin is the worst it's ever been. i'm using the steroid cream more and more, because i am unbearably itchy and it's spreading, and doctors won't tell me to do anything else or give me any more information and the steroids are my only source of relief. november 2016 i go on a trip and forget my steroid cream, and have to rush to a pharmacy for hydrocortizone because my skin is angry and red almost immediately. my dad tries to get me to go to a doctor and i refuse because i know what they'll say.
i get back from this trip. my partner, having watched this progress and shocked by what happened without steroids for such a short time, goes online and digs for info. by chance he finds stories from people on reddit with the same story as mine. it's scary how much it matches up - the lack of info, the increased use, doctors blowing them off, a constantly worsening rash. they call it topical steroid withdrawal, and they show pictures of the process they went through before and after stopping steroid use. it looks horrifying. angry, red, inflamed skin, sometimes bleeding, covering their body, with this condition lasting anywhere from a few months to a few years. some cases are so severe it looks like their whole body has ballooned, and they have to soak in epsom salts to relieve it.
no medical professional had ever told me my skin could become dependent on the creamd they prescribed me for 7 years. my only direction on how much to take them was given to me at age 13; as needed but recommended roughly a couple times a week. within a couple hours of discovering this condition, it was obvious this is what happened to me. my partner cries, i cry, because this looks fucking awful to go through and we don't know how severe my case will be. he calls a few doctors, they have never heard of this condition. we are past doubting, and angry. i throw my steroids in the trash. we're doing this cold turkey or not at all. within 48 hours, my skin is inflamed from my eyelids to my toes. it burns, it itches, and it's everywhere.
showering was excrutiatingly painful. drying my skin out for any amount of time made it burn with an intensity i'd never felt. i started showering less and less, and often with cold water. i couldn't do the dishes, i was lucky to have coworkers who took that role over at work and a partner who did all of them at home, with no complaints. customers at my job started commenting on it, worrying it was contagious (it's not) and giving judgemental looks to a girl working 60 hours a week on 3 hours of sleep a night and in constant agony. sleep was hard. i would lay on ice packs to get to sleep (ice numbs and serves as temporary relief, wrap the ice is towels and don't leave it on too long). getting to sleep would still take hours. i would itch in my dreams, and wake up in the middle of the night to realize i'd been scratching nearly to the point of bleeding in my sleep. skin to skin contact with my partner made it worse, so intimacy of any form was nearly impossible. he could barely touch me. my only other saving grace besides ice was goldbond cream, a steroid free cream recommended by people online that burned for a while when applied but relieved the itching to a small extent. i used it daily, and every day i burned. this rash was constant, covering every part of my body, extremely painful, and itchy on a level i never knew existed. it disrupted every aspect of my life.
my case lasted for 6 months. in comparison to pictures and stories online, it was mild and relatively short lived. my partner says watching it happen was one of hardest things he's ever gone through. most of it is a confused painful blur to me.
at the end of the 6 months, my skin started to clear. by late 2017, every symptom was gone. no eczema, no red skin. i had the healthiest skin i'd had since i was 13.
since then, i get occasional tiny flare ups, which are normal. almost always in the winter when the air turns dry. small patches on my arms, barely noticeable in comparison. the only other symptom i am left with is extremely sensitive skin. i use no scented lotions, i do not switch from lubriderm ever. i do not change body wash. i do not change laundry detergent. i do not experiment with any type of skin product.
i am writing this now, because a few months ago i got a small rash. the air was just starting to get dryer, so i brushed it off. since then, it has gotten worse and spread and i am reliving many aspects of my experience in 2016, only i have without any doubt not used a steroid. i do not put anything on my skin i haven't used before or carefully read the label on. we just yesterday discovered we switched laundry detergents by accident. same brand, but scented. this rash is the worst i've had since going through withdrawal, and likely caused by fucking laundry detergent.
we did do some googling, before realizing our mistake, to figure out why it was happening again and what the cause could be. and we found a lot more info on topical steroid withdrawal, from sources other than reddit. actual health sites now list it, whereas none did before. i am now, finally, going back to a dermatologist. i am confident in my knowledge of what happened, i am only now looking for advice on how to more carefully manage my flare ups and sensitive skin. i am fairly certain this dermatologist knows what topical steroid withdrawal is.
i am so glad this is finally being more widely recognized, but caution is still needed. please do not let doctors blow you off, please trust your instincts, and please be EXTREMELY careful with the use of topical steroids. do not use them frequently, and if you find yourself needing to use them more and more because your condition is worsening, stop. if you are applying them to someone else, wash your hands immediately afterwards. if you feel like your skins not right and your diagnosis is no longer correct, believe yourself.
thanks for reading. take care of your skin. if you've gone through this, i am so sorry. i am always willing to listen and support. again, i'm not a doctor, and for reference, i am white. if you are a person of color your experience could look very different.
origamiaround
pixelskylines
dededos
jacobvanloon
izzy806
dailybridgerton
blakekathryn
romaincrisis
snowghoul
kianamaiart
