Last summer, she didn’t think twice about using a steroid cream to relieve the sting of a mild sunburn. “I applied it to my arms for a few days, then I stopped,” she recalls. A few days later, she developed a rash, not only on her arms but also the rest of her body. “My skin was burning red, then after a few days it would peel off, like it was shedding. There were flakes everywhere. It was disgusting,” she recalls. The cycle would repeat — the rash, then the peeling — for six long months. “I was burning and itching, my eyes were swollen, and my arms looked as if I was wearing a shirt with red sleeves,” Chho says. Even before she went to a dermatologist for help, Chho suspected she was experiencing topical steroid withdrawal, a condition also known as TSW, topical steroid addiction, or red skin syndrome.
What Is Topical Steroid Withdrawal?
Topical steroids, the most widely prescribed medications for eczema flares, work by reducing inflammation. They are an important treatment option but can have negative side effects, such as thinning skin, particularly when patients use higher-dose formulations for extended periods of time. Topical steroid withdrawal is essentially a rebound response to overuse of the medication. People who’ve been using topical steroids on an ongoing basis and then suddenly stop are more likely to report having TSW. According to the National Eczema Association (NEA), symptoms of topical steroid withdrawal include burning, weeping (skin oozing liquid), flaking, shedding, peeling, spreading, swelling, redness, wrinkling, thin skin, pus-filled bumps, cracking, itching, nodules, pain, insomnia, hair loss, shivering, fatigue, depression, and disability. The NEA has expressed a commitment to raising awareness about topical steroid withdrawal, a diagnosis that remains controversial among dermatologists. Some patients report that their doctors are skeptical that TSW is real. Looking for validation and empowerment, patients are choosing to share dramatic images of their skin on Instagram and TikTok, with the hashtags #topicalsteroidwithdrawal and #tsw.
Patients Are Working to Launch a #TSW Movement
Chho learned about TSW a few years ago when she started searching online for information about a severe skin reaction she was experiencing and discovered a nonprofit organization called ITSAN — the International Topical Steroid Awareness Network. “They had a Facebook page full of people with the same symptoms that I had,” she says. But her dermatologist was doubtful when she brought up TSW as a potential diagnosis. “He told me: ‘Don’t be part of a Facebook mob. That condition doesn’t even exist,’” she says. Chho was hesitant to go back to that dermatologist during her skin scare last summer. Instead, she went to an urgent care facility, where a physician’s assistant offered … more steroids. She decided to seek help online, posting about her condition on TikTok (@emchho). “In the video, I totally broke down — and the post blew up,” she says. Within a month, she went from having 20 followers to 10,000. Today, she has more than 13,000 followers, and she continues to post about TSW — providing updates about her skin, trying products, and savoring the groundswell of support. She’s far from the only TSW influencer. As of July 2022, TikTok videos with the hashtag #topicalsteroidwithdrawal have garnered more than 331 million views, while those tagged #tsw have gotten more than 515 million views.
How Common Is Topical Steroid Withdrawal?
Most dermatologists say tropical steroid withdrawal is real — but relatively rare. “I use topical steroids as the first line of treatment on many of my patients with eczema, and the vast majority that I’ve seen have not experienced TSW,” says Joy Wan, MD, an assistant professor of dermatology at the Johns Hopkins University School of Medicine in Baltimore. Dr. Wan points out that there isn’t much data documenting how many people have topical steroid withdrawal. In 2015, the NEA found just 34 studies about the condition. The research review, published in the Journal of the American Academy of Dermatology, was updated in the Journal of Dermatological Treatment in 2022, but the number of relevant studies was still scant. The research review did reach a few conclusions, however — among them that TSW is most common in adult women who apply mid- or high-potency steroids to their face or genitals. The condition also seems to be associated with the prolonged use of daily topical steroids on sensitive areas or the use of topical steroids without tapering or periodic breaks.
Why Topical Steroid Withdrawal Is an Elusive Diagnosis
It’s possible that TSW is underdiagnosed because there is no test that can confirm a person has it, says Katherine Siamas, MD, a clinical assistant professor in the department of dermatology at Stony Brook Medicine in Commack, New York. Adding to the ambiguity, there are other possible explanations for skin issues that can look like TSW. “Symptoms can result when the underlying condition the patient is being treated for — whether eczema or something else — has not been adequately controlled, so they flare up when the medication is stopped,” Dr. Siamas says. Yet there are key differences between the symptoms of topical steroid withdrawal and those of atopic dermatitis, which can offer clues to what’s going on. “With TSW, the literature notes that redness tends to be concentrated in the face first, then spreads to other areas, including the genitals,” says Wan. Atopic dermatitis, on the other hand, can appear anywhere on the body, but typically the hands, neck, inner elbows, ankles, knees, feet, and around the eyes, according to the Cleveland Clinic. And while people with atopic dermatitis generally experience itching, “Patients with TSW feel a burning or stinging sensation,” says Wan.
How to Use Topical Steroids Safely
Worried that you might develop TSW? “You may be at greater risk if you’ve been prescribed or have been using topical steroids inappropriately, which is to say too frequently or for too long a period of time,” says Wan. “Usually, they’re good medications we use routinely,” says Siamas. “But it’s important to go with the appropriate strength for the location; for instance, we don’t typically use a high-potency formulation on the thinner skin of the face or the groin” — where the medication is more easily absorbed by the body. Besides potency, it’s also critical to consider length of use. “While there’s no strict cutoff, we try not to prescribe the higher-strength steroids for more than two to four weeks, maximum,” says Wan. Beyond that, she adds, it’s vital to build in breaks, especially if you’re applying the medication to areas like the face or groin. Chho says that her dermatologist didn’t talk about limits. “He told me I would need topical steroids for the rest of my life,” she recalls. “I think the problem is that doctors don’t always teach patients how to use the medication properly — the doctor gives you a tub of it and you end up just slathering it on.” Siamas agrees about the need for doctors to warn patients about potential issues. When seeing an atopic dermatitis patient for the first time, “I make sure we have the conversation about not overusing steroids,” she says. “I may prescribe a topical steroid first, to calm things down, then have someone come back in two weeks to see how it’s working. After two or three weeks, I might switch to a nonsteroid medication, for maintenance.” For patients with long-standing skin conditions, she takes a different tack: “I prescribe both a steroid and a nonsteroid, and have them alternate.” For someone like Chho, Siamas says she would wean her off topical steroids while adding a nonsteroidal medication. “I might also try an oral anti-inflammatory medication and an oral antibiotic, like doxycycline, to quiet the skin down a bit.”
Life After TSW
For Chho, whose dermatologist has since acknowledged that she might have had TSW after all, the best option felt like not using anything at all on her skin, at least for a time. Now she is taking upadacitinib (Rinvoq), an oral medication that the U.S. Food and Drug Administration recently approved for atopic dermatitis. “I’m not fully healed, but I’m better — it’s working for me,” she says. Her best advice for those who suspect they may have TSW: “If you think something is wrong, don’t doubt your feelings. Keep advocating for yourself and fighting to get the help you need.”
