Nurse Kathryn Tullos immediately noticed something was different about her youngest son’s eczema symptoms. She and her three other children had all suffered from eczema, so she was well-acquainted with the condition and steroid cream used to treat it.
At first, a stronger topical steroid treatment prescribed by a pediatric dermatologist helped, Tullos says. But then stinging red rashes started to appear all over his body, and wouldn’t go away. “That’s when I was kind of like, alright, this doesn’t look like eczema anymore…in my mind, it looked like he’s resistant to the drugs.”
These symptoms, Tullos would eventually conclude, were indicative of something different than eczema—a skin condition that has been gaining traction online known as topical steroid withdrawal (TSW).
TSW refers to a severe outbreak of skin inflammation that some believe to be caused by prolonged use or abruptly discontinued use of topical steroids. First introduced in a 1979 paper, discussion of TSW has exploded online in the last decade. Graphic personal testimonials about the dangers of topical steroid addiction have gone viral on social media, bringing renewed attention to the mysterious symptoms.
Whether TSW symptoms are a flare-up of underlying skin conditions or a separate condition linked to prolonged steroid use remains poorly researched and hotly debated. Experts shed some light on what we do and don’t know about the condition so far.
Topical steroid withdrawal remains undefined
Since they were introduced in 1951, topical steroids have become the go-to treatment for inflammatory skin conditions, most commonly eczema. Usually applied as a cream, lotion, or ointment, the drug penetrates the skin and suppresses inflammation in the affected area. Topical steroids are one of the most widely prescribed drugs in dermatology.
“They’re reliable, affordable, and generally pretty safe, particularly in the short-term,” says Peter Lio, a clinical assistant professor of dermatology at the Northwestern School of Medicine and board member of the National Eczema Association. Though the exact duration for using topical steroids varies by patient, he uses no more than two weeks in a row and fewer than 14 days per month as a rough rule of thumb.
In the longer-term, however, problems can start to arise. Prolonged or overuse of topical steroids can cause rosacea, skin thinning, stretch marks, says Bruce Brod, a clinical professor of dermatology at the University of Pennsylvania’s Perelman School of Medicine, and some attest, an extreme and debilitating withdrawal. TSW sufferers have described widespread redness, burning, swelling far beyond their normal eczema symptoms, and in some cases, skin lesions and infection.
A colored scanning electron micrograph (SEM) shows skin effected by eczema, in which the outer layer of the skin grows very rapidly and is easily shed—most often resulting in redness, swelling, itching and dryness, flaking, blistering, cracking, or bleeding.
Micrograph by STEVE GSCHMEISSNER, SCIENCE PHOTO LIBRARY
Leading eczema researcher Emma Guttman-Yassky says this is often the result of misusing topical steroids or stopping treatment abruptly. The medicine isn’t meant to be used indefinitely because of the potential for skin damage, and as with oral steroids, patients should gradually taper off use, says Guttman-Yassky, chair of the dermatology department at Mount Sinai’s Icahn School of Medicine. She typically recommends weaning patients off topicals after four weeks, “particularly the moderate to high potency” strength.
But many patients don’t get this information about dose and duration, Tullos says. “I was never told any dose or, or how to use it.” Only in reading the fine print on the product label and in published clinical trials did she learn about the potential side effects from using topical steroids on more than 20 percent of the body and for a prolonged period.
Some doctors, like Brod, have begun to diagnose TSW in patients—but with difficulty. “There’s a broad spectrum of presentation…That’s part of the problem: There’s no distinct clinical marker. There’s no biomarker. There’s no specific lab test.”
The condition isn’t officially recognized by the International Classification of Diseases and has no clear diagnostic criteria. Still, Lio says he’s “convinced that it is a real phenomenon.” He describes patients who have been off steroids for years but “continue to have terrible disease,” which he believes is “fundamentally different from the eczema they started treating years prior.”
Are topical steroid withdrawal symptoms a flare-up of a preexisting condition?
Aaron Drucker, a dermatologist and associate professor at the University of Toronto, says hearing stories of bad reactions to topical steroids “runs counter to our experience” that they have been used safely and effectively for decades.
Guttman-Yassky believes that explaining these symptoms as “withdrawal” from steroids is inaccurate. TSW, as it’s been described, is “an exaggerated concept…and many of the people that put that notion forward are not necessarily dermatologists.”
A major problem is inappropriate use of topical steroids alone in cases of severe eczema, she says. In most instances, patients who have come to her with TSW symptoms see improvement through finding a new course of treatment that attacks the underlying inflammation at a systemic level.
“Topical steroids are good to suppress disease when patients have limited disease,” she says. But when the condition is systemic rather than localized, meaning more than 10 percent of the body surface area is affected, liberally applying steroids will “just mask the problem” until the symptoms become too severe for the topicals alone—or flare up immediately upon stopping the drug. “If you have a patient who has multiple lesions, you’re chasing your tail,” she says. In that case, a different intervention is needed, such as biologics or JAK inhibitors, which mediate inflammation at the systemic level.
Alternative treatment worked for Tullos’ son. After he was taken off topical steroid treatments, his symptoms receded significantly, and after six months of ultraviolet light therapy, they disappeared altogether. “Knock on wood,” Tullos says, “he’s clear to this day.”
The search for answers
Fear of topical steroids is hardly new; in fact, the phenomenon is so widespread it’s been given an official name: corticophobia.
That distrust has driven many to search for answers and support in online communities, which has also amplified steroid phobia and raised concerns about misinformation.
Rather than relying on unverified sources, experts recommend that patients seek professional advice from dermatologists who specialize in eczema and other inflammatory skin conditions. “There’s a risk of misbranding topical steroids as something that shouldn’t be used, and that’s not the case at all,” Brod says. “It’s all about education and appropriate use.”
Meanwhile, patient advocates, like Tullos, are trying to raise awareness and fund research into TSW. As a board member of the International Topical Steroid Awareness Network, she’s also lobbying for adding warning labels to topical steroids (such as those published by the United Kingdom), getting an official ICD-10 code, and building a long-term patient registry.
Many questions remain, such as how prevalent TSW-associated symptoms are, who is most likely to be affected, and how—if at all—to define the condition. New research is ongoing, including a study conducted by the National Institutes of Health looking at the tissue profiles of people who believe they’re suffering from TSW. Preliminary results from the paper, which is now in preprint, suggest that TSW has clinically distinct symptoms—possibly due to a chemical irritation—and may indeed merit its own diagnosis.
For now, there’s rampant confusion about whether TSW exists, among both patients and the public, Brod says. “It’s a sort of a chicken or the egg theory. What comes first—the underlying condition or the topical steroid withdrawal or is it just a combination of the two?”
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