Kelly Barta was turning red.\u00a0<\/p>\n
It was 2012, and the 38-year-old mother of two had just quit the topical steroids she\u2019d used for nearly 30 years to treat her eczema. Within days, she was crimson from head to toe, tormented by searing pain and a \u201cbone-deep\u201d itch.<\/p>\n
\u201cIt literally felt like someone poured boiling water over my whole body,\u201d Barta told The Post. The burning wouldn\u2019t let up for five years \u2014 and in that time, she lost her career, her marriage and nearly her life.<\/p>\n
Kelly Barta is the executive director of the Coalition of Skin Diseases. Courtesy Kelly Berta<\/p>\n
Barta was battling topical steroid withdrawal syndrome, a debilitating condition some face after quitting high-potency creams used in treating skin issues like eczema.\u00a0<\/p>\n
Common symptoms include intense burning, redness, itching and skin shedding. Many sufferers are bedridden or housebound for months \u2014 or even years \u2014 before the effects begin to subside, according to the International Topical Steroid Awareness Network<\/a>, which supports those affected.<\/p>\n From childhood rash to decades on steroids<\/p>\n Roughly 10% of the US population \u2014 about 31.6 million people \u2014 live with some form of eczema, the most common chronic inflammatory skin condition in the country, according to the National Eczema Association<\/a>.<\/p>\n Barta was first diagnosed as a child, when patches of itchy, red and irritated skin bloomed behind her knees and in the crooks of her arms.<\/p>\n Eczema is a common skin condition that can cause a rash, dry skin and itchiness. \u00d0\u00d0\u00bb\u00d1\u00d0\u00b3\u00d0\u00b0 \u00d0\u00a2\u00d0\u00b5\u00d1\u00d0\u00bd\u00d0\u00b0\u00d0\u00b2\u00d1\u00d0\u00ba\u00d0\u00b0\u00d1 \u2013 stock.adobe.com<\/p>\n She managed it with moisturizers and hydrocortisone cream until she became a preteen, when the onset of puberty and the hormonal fluctuations that come with it caused her eczema to grow worse, spreading to her hands and her neck.<\/p>\n \u201cThere\u2019s a lot of bullying around skin conditions because it\u2019s associated with infectious diseases, so being in middle school, all I wanted was to look better, even more than feel better,\u201d Barta said.\u00a0<\/p>\n When she went to a dermatologist and they prescribed her topical corticosteroids, the effects were almost instant.<\/p>\n \u201cWithin a couple of days, the rash cleared up and I felt a lot better too,\u201d Barta said. \u201cI ended up managing my skin like that for 26 years.\u201d<\/p>\n Thin skin, big trouble<\/p>\n Topical corticosteroids are some of the most common treatments for eczema, with one multinational study<\/a> finding that 91% of people affected by the condition had used them.<\/p>\n Though generally considered safe and effective when used for short periods, the body can build up a tolerance to topical steroids over time, requiring stronger doses to clear the skin.<\/p>\n Topical steroid creams are applied directly to the affected area of the skin. Photo Sesaon \u2013 stock.adobe.com<\/p>\n When Barta\u2019s eczema would flare, doctors kept upping her prescription until she was on one of the strongest formulas on the market. <\/p>\n She spent 10 years on the heavy-duty cream \u2014 and developed new allergies along the way, including to fish and latex.<\/p>\n \u201cI know steroids can thin the skin, and my idea was maybe these things in the environment are getting into my bloodstream and I\u2019m becoming hyperreactive,\u201d Barta said.<\/p>\n \u201cI was getting to the point where I would put my hand in my purse and come out with hives,\u201d she added.<\/p>\n \u201cYou\u2019re imprisoned in this body with unrelenting pain. I remember thinking, \u2018Don\u2019t try to get to tomorrow \u2014 just survive the next hour.\u2019\u201d<\/p>\n Kelly Barta<\/p><\/blockquote>\n Barta said her general practitioner dismissed her concerns, insisting she\u2019d have to use topical steroids for the rest of her life to keep her eczema at bay. But a pharmacy tech at Costco flagged the dose.<\/p>\n \u201cShe didn\u2019t say anything other than, \u2018Be careful you\u2019re not overusing this,\u2019\u201d Barta said. \u201cBut what does overusing mean?\u201d<\/p>\n Every morning, the NY POSTcast <\/a>offers a deep dive into the headlines with the Post\u2019s signature mix of politics, business, pop culture, true crime and everything in between. Subscribe here!<\/a><\/strong><\/p>\n The label warned against using the cream longer than two weeks unless directed by a doctor \u2014 which hers always did.<\/p>\n \u201cThat\u2019s a big caveat,\u201d she said. \u201cMost doctors feel like this is perfectly safe to use forever.\u201d<\/p>\n Researchers are studying whether weaning patients off of topical steroids could lower their risk of withdrawal symptoms. Courtesy Kelly Berta<\/p>\n And Barta wasn\u2019t alone. The same multinational study found adult eczema patients used topical steroids for an average of 15.3 years. Three-quarters applied it one to two times a day, and half used it between 15 and 30 days each month.<\/p>\n Shaken, Barta began researching. She discovered that while corticosteroids are intended to reduce inflammation, they can sometimes provoke a hypersensitivity response, triggering or worsening allergic reactions, according to ITSAN.<\/p>\n \u201cIf you have people on steroids for decades \u2026 we might look better, but what\u2019s happening internally?\u201d she wondered.<\/p>\n Burning alive<\/p>\n Barta found a Canadian study suggesting barrier creams could cut topical steroid use. So she started weaning off, switching to jojoba oil and mango butter.<\/p>\n Three months later, Barta quit steroids entirely. Within 36 hours, her skin went haywire.<\/p>\n \u201cI started to burn so badly that I couldn\u2019t sleep,\u201d she said. \u201cI was up on the couch all night, breathing like I was in childbirth.\u201d<\/p>\n Topical steroid withdrawal is also known as red skin syndrome. Courtesy Kelly Berta<\/p>\n A frantic Google search led her to a topical steroid withdrawal support site \u2014 and a list of familiar symptoms.<\/p>\n \u201cI checked all the boxes,\u201d Barta said.<\/p>\n At first, red splotches appeared where she\u2019d applied the cream most. Then the splotches spread. Eventually, her entire body burned and itched relentlessly.<\/p>\n \u201cI was bedridden for a year and a half,\u201d Barta said. During that period, she lost her hair, developed a cataract, gave up her music career and could barely care for her two young sons.<\/p>\n \u201cYou think you\u2019re getting help, and then you end up 100 times worse off than you were before.\u201d<\/p>\n Kelly Barta<\/p><\/blockquote>\n She spent her days cycling between bed and bath, lying naked on towels as every movement tore open her cracked, oozing skin.<\/p>\n Patients with topical steroid withdrawal are vulnerable to life-threatening infections. Courtesy Kelly Berta<\/p>\n Insomnia hit next, followed by sharp, stabbing nerve sensations and thermal dysregulation that left her shivering under a feather duvet in 90-degree Georgia heat.<\/p>\n \u201cYou\u2019re imprisoned in this body with unrelenting pain,\u201d Barta said. \u201cI remember thinking, \u2018Don\u2019t try to get to tomorrow \u2014 just survive the next hour.\u2019\u201d<\/p>\n She lost 40 pounds. Doctors ran tests and came up empty. One physician searched the internet for information during her appointment.<\/p>\n \u201cNo one really knows what\u2019s going on,\u201d Barta said, adding that many TSW patients get dismissed by doctors who mistake their symptoms for severe eczema and just prescribe more topical steroids.<\/p>\n Family members also urged her to go back on the medication, but she refused. <\/p>\n \u201cOn a gut level, you know that thing has been slowly poisoning you,\u201d she said. \u201cWhy would you go back?\u201d<\/p>\n Barta was housebound for three years, losing her husband of 21 years along the way. With her skin barrier weakened, she caught a deadly eczema herpeticum infection and nearly died in the hospital.<\/p>\n Barta\u2019s skin has improved, but she still has some problem areas, like her hands and neck.<\/p>\n Slowly, she grew stronger, and the pain eased as her body began to heal. Still, it took more than 1,780 days for the burning to finally subside \u2014 and 13 years later, she\u2019s still recovering.<\/p>\n \u201cHow did this happen to me?\u201d Barta, now 51 and president of ITSAN, recalled wondering. \u201cYou think you\u2019re getting help, and then you end up 100 times worse off than you were before.\u201d<\/p>\n But you don\u2019t need decades on topical steroids to develop TSW.<\/p>\n \t\t\t\t\t\t\tStart your day with all you need to know\t\t\t\t\t\t<\/p>\n \n\t\t\t\t\t\t\tMorning Report delivers the latest news, videos, photos and more.\t\t\t\t\t\t<\/p>\n \t\t\t\t\t\tThanks for signing up!\n\t\t\t\t<\/p>\n False promises<\/p>\n Jada Jones<\/a> was also diagnosed with eczema as a small child. She had mostly outgrown it by middle school, except for a few patches on her neck.<\/p>\n When a dermatologist prescribed a mid-strength topical steroid, her skin cleared up fast.<\/p>\n \u201cI was no longer struggling with eczema at all, or so I thought,\u201d she said. \u201cIn reality \u2026 you can\u2019t really tell what\u2019s going on.\u201d<\/p>\n Jones used topical steroids on and off until her junior year of high school, when stress triggered a bad flare-up. After learning of TSW online, she told her dermatologist she wanted off the medication.<\/p>\n Jada Jones went viral while documenting her experience with topical steroid withdrawal syndrome online. jadajonesss\/Instagram<\/p>\n \u201cMy dermatologist said, \u2018You\u2019re young. You\u2019re never going to have to go through that,\u2019 and then I got boosted to Class 1 steroids \u2014 the strongest ones,\u201d she remembered.<\/p>\n \u201cAfter being reassured that I wouldn\u2019t have to go through this condition, it was just sort of like, \u2018OK, fine, I\u2019ll listen to my doctor.’\u201d<\/p>\n \u201cThey\u2019re looking at you like you\u2019re damn near a burn victim.\u201d<\/p>\n Jada Jones<\/p><\/blockquote>\n Jones\u2019 skin stayed clear for three years with occasional topical steroid use. She moved from Charlotte, North Carolina, to LA, pursuing acting and content creation, and met her partner, Chris.<\/p>\n Then, in June 2022, her skin took a terrifying turn.<\/p>\n \u201c[It] sort of looked like spots that turned into bigger, purplish, reddish bruising,\u201d Jones said. \u201cIt looked really, really odd; it didn\u2019t look like eczema.\u201d<\/p>\n After searching online, she discovered the potent topical steroids she\u2019d been using might be playing a role. <\/p>\n Topical steroid withdrawal syndrome affects the whole body, not just eczema-prone areas. Courtesy Jada Jones<\/p>\n Booked for a three-day photo shoot, she made it through the first day, but her skin felt like it was on fire. She stayed home the next morning.<\/p>\n \u201cI was bedridden from that day on for the next three or four months,\u201d Jones said. \u201cIt was so crazy to realize that, oh my gosh, I think this is the one thing they said couldn\u2019t happen to me.\u201d<\/p>\n \u201cMy body was forever changed from that moment forward,\u201d she added. <\/p>\n Six years after her first steroid prescription, she vowed never to use them again. What ensued was pure torture, both mentally and physically. <\/p>\n A nightmare no one could fix<\/p>\n Soon, her whole body was red, inflamed and in excruciating pain. She could no longer work and needed full-time care.<\/p>\n \u201cIt became sort of this nightmare, because we didn\u2019t know what to do,\u201d Jones said. <\/p>\n She tried traditional Chinese medicine and other comfort measures with no relief. Aside from loved ones, the online TSW community was her lifeline.<\/p>\n \u201cWith TSW, the most unfortunate part is that once it starts happening, it just has to take its course, unless you go back on topical steroids, which would just prolong the situation even more,\u201d Jones said. <\/p>\n Like Barta, she suffered deep, relentless itch, nerve sensations, thermoregulation issues and cracked, oozing skin.<\/p>\n At her annual checkup, doctors were baffled. \u201cThey\u2019re looking at you like you\u2019re damn near a burn victim,\u201d Jones said. \u201cYou have really no idea how to advocate for yourself, but you\u2019re clearly sick and need help.\u201d<\/p>\n Adult women are more commonly affected by topical steroid withdrawal syndrome than men. Courtesy Jada Jones<\/p>\n Her battle with TSW forced Jones and her partner to leave California and return home to North Carolina. For a year, symptoms settled, then flared in cycles.<\/p>\n \u201cNo one will ever truly grasp the horrifying, never-ending ordeal that is enduring a condition that traps you in your own half-alive corpse with no escape.\u201d<\/p>\n Jada Jones<\/p><\/blockquote>\n In late 2023, she heard a fellow sufferer found relief in Tulum\u2019s healing saltwater.<\/p>\n \u201cI wasn\u2019t in too bad of a state at the time, but I was also risking my body going backward,\u201d Jones said.<\/p>\n She and her partner went to Mexico, where her skin improved, then regressed. She, too, got a major infection that left her bedridden for a month.<\/p>\n \u201cAt that point, I was really, really confused. I didn\u2019t know what to do,\u201d Jones said. \u201cI did not want to live anymore because it was just too much, especially after seeing that my body was getting better at one point.\u201d<\/p>\n There is no standard, agreed-upon treatment for topical steroid withdrawal syndrome. Courtesy Jada Jones<\/p>\n Doctors said topical steroids were the only option. Instead, she took to the sea.<\/p>\n \u201cI started forcing myself into the ocean, something that could have been so dangerous, but it ended up working out for me,\u201d she said.<\/p>\n After 4 \u00bd months in Tulum, she returned to Charlotte, her skin better but not fully healed.<\/p>\n Still fighting, but living again<\/p>\n She then traveled to Thailand for cold atmospheric plasma therapy, known as CAP, which has been shown to reduce inflammation, fight infection and accelerate recovery for those with TSW.<\/p>\n \u201cThis clinic doesn\u2019t have a website or anything, so it sounds like rinky-dink, scary and weird,\u201d Jones said, \u201cbut when you\u2019re at this dire point in your life, you\u2019re willing to do anything.\u201d<\/p>\n \u201cIt\u2019s beyond skin deep \u2014 it affects every aspect of your professional life, your social life, your personal life,\u201d she added of her condition.<\/p>\n Jones spent nine months in Thailand. \u201cIt was really, really intense, but it helped regenerate my skin and sped up the healing process a bit,\u201d she said.<\/p>\n Terrified to return to the US and lose access to CAP, she was relieved to find a fellow sufferer in Asheville who owned the machine she could use.<\/p>\n Jones hasn\u2019t had CAP therapy since January, now managing her skin with red light and infrared therapy daily.<\/p>\n \u201cMy skin right now is like very mild eczema symptoms that I would rather tolerate for the rest of my life than to ever go through that again,\u201d Jones said.<\/p>\n \u201cNo one will ever truly grasp the horrifying, never-ending ordeal that is enduring a condition that traps you in your own half-alive corpse with no escape from an itchy, burning and red hellfire of a body,\u201d she added.<\/p>\n Now 23, Jones\u2019 energy has finally rebounded, and she\u2019s living a fuller life.<\/p>\n Cold atmospheric plasma treatment is being used as a potential therapy for topical steroid withdrawal syndrome. Courtesy Jada Jones<\/p>\n \u201cIt\u2019s like you realize that it was never worth it to be on those meds in the first place, but who could have told you any better?\u201d she noted.<\/p>\n Life beyond steroids<\/p>\n While TSW is a well-documented phenomenon, research into its causes, effects and treatment is still limited.\u00a0<\/p>\n Without consistent diagnostic criteria, doctors often mistake TSW for a severe eczema rebound, according to ITSAN. <\/p>\n Jones continues to battle symptoms of topical steroid withdrawal, though they\u2019ve improved over the past year. Courtesy Jada Jones<\/p>\n While topical steroids can be safe when used correctly, companies like Phoilex<\/a> offer alternatives to help people manage their skin.<\/p>\n Their Active ReLeaf Spot Gel is a plant-based option for managing eczema and psoriasis. In trials, 93% of users felt relief from itching for four to 12 hours, and 74% saw fewer flare-ups.<\/p>\n \u201cIt\u2019s a great alternative for someone who\u2019s going through eczema,\u201d Jones said. \u201cI\u2019ve had friends who\u2019ve tried it and they love it for maintaining their skin.\u201d<\/p>\n \t\t\t\t\t\t\n
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