What Is Topical Steroid Withdrawal, and Why Is It Controversial?

Emilie Chho has had atopic dermatitis (the most common form of eczema) since she was an infant. As a child, she commonly used steroid creams to ease her itchiness and discomfort.

That’s why, as a young adult, she didn’t think twice about using a steroid cream to relieve the sting of a mild sunburn on her arms. A few days later she developed a rash not only on her arms, but also all over 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,” says Chho, who is now in her 20s.

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?

The NEA has expressed a commitment to raising awareness about topical steroid withdrawal, a diagnosis that remains controversial because some patients report that their doctors are skeptical that TSW is real.

Looking for validation and empowerment, people with TSW are sharing dramatic images of their skin on Instagram and TikTok, with the hashtags #topicalsteroidwithdrawal and #tsw.

Patients Have Launched a #TSW Movement

A few years prior to the sunburn incident, Chho decided to do some online research after experiencing a severe skin reaction. She first learned about TSW when she 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 after the sunburn scare. 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.

To date, Chho now has more than 13,000 followers, and she continues to post about TSW — providing updates about her skin and trying products.

She’s far from the only TSW influencer. As of June 2024, TikTok videos with the hashtags #topicalsteroidwithdrawal and #tsw have gotten hundreds of millions of views.

How Common Is Topical Steroid Withdrawal?

Most dermatologists say topical 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.

To use topical steroids safely, patients are typically advised to slowly taper off or gradually discontinue using the medication after their condition has completely cleared.

The original review found that TSW was reported mostly on the face and genital area of women, primarily among those who had used potent topical steroids inappropriately and for longer periods of time. The updated review cited use of the topical steroids for cosmetic reasons as one cause.

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.

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 [some] 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.”

The Takeaway

For Chho, whose dermatologist has since acknowledged that she might have had TSW after all, the lesson in all this is to push back when a doctor dismisses your symptoms and continue to look for answers.

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.”