"I Became a Hermit": What It's Like to Live With Topical Steroid Withdrawal

SIDE EFFECTS INCLUDEWhat It's Like to Live With Topical Steroid WithdrawalWhile most people can manage steroids for eczema and other chronic skin conditions, some develop what's known as TSW — an understudied phenomenon that ruins their skin and mental health. 

By Tamim Alnuweiri

May 10, 2022

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Sami Jayne was diagnosed with eczema as a baby, at the age of just 10 months old. Her skin has been "up and down," her whole life. She took the steroid tablet prednisone for two years as a child, but at other points in her life she used various mild steroid creams. As an adult in her third trimester of pregnancy, Jayne started to use the topical steroid Elocon on her hands and hydrocortisone on her face. According to her, that's when things went wrong. 

"Around three months postpartum, I was having to use Elocon daily," Jayne, who is 30 and lives in Birmingham, England, tells Allure. She was seeing raised red lumps on her face, which seemed like hives at first. Her doctor recommended Eumovate, another topical steroid. When that treatment didn’t work, she turned to her Instagram community of eczema sufferers, and started to learn more about topical steroid withdrawal syndrome.

Meet the experts:

• Dendy Engelman, MD, FACMS, FAAD, board-certified cosmetic dermatologist at Shafer Clinic in New York City
• Hadley King, MD, a dermatologist and clinical instructor of dermatology at the Weill Medical College of Cornell University in New York City
• Anthony Rossi, MD, a board-certified dermatologist and Mohs surgeon at Memorial Sloan Kettering Cancer Center in New York City

Atopic dermatitis, or eczema, is an increasingly common skin condition worldwide according to the American Journal of Managed Care. It's characterized by symptoms including rashes, dry, flakey, and itchy skin, red scaly patches, and raised bumps. 

There is no bonafide cure for the condition, but there are a number of treatments. Topical steroids like the ones Jayne was on are among the most common ways to manage the inflammatory aspects of eczema. "Topical steroids are medicated treatments used to address inflammatory skin conditions such as eczema and psoriasis," Dendy Engelman MD, FACMS, FAAD, board-certified cosmetic dermatologist, says. 

Many people can use topical or oral steroids without experiencing any severe side effects, but a small, unknown percentage suffer from something called topical steroid withdrawal (TSW). TSW can occur when people have developed a dependency on topical steroids and decrease or stop usage.

"The higher the potency, the longer the period of [steroid] application, and the more frequent the application, the higher the risk of topical corticosteroid withdrawal," says Hadley King, MD, a New York City-based dermatologist. The risk of this condition increases when patients use prescription-grade steroid creams, but over-the-counter ones can trigger TSW, too.

"The higher the potency, the longer the period of [steroid] application, and the more frequent the application, the higher the risk of topical corticosteroid withdrawal."

Anthony Rossi, MD, a board-certified dermatologist and expert on sensitive skin, adds that, "Dermatologists will not use topical steroids for an extended period of time if we don’t have to because we don’t want the side effects of them such as thinning of the skin, stretch marks, or acne." Doctors typically like to wean people off of oral and topical steroids slowly to avoid flare-ups.

Sedi Khumalo, who is in her 20s and based in Manchester, England, currently lives with TSW. Like Jayne, she was diagnosed with eczema as a child, and experienced flare-ups her whole life around her inner elbow and behind her knees. These flares usually seemed like the result of seasonal changes, she explains.

"The potency of my prescriptions became stronger and stronger over the years," Khumalo says. "I remember telling my [doctor] that I felt like the steroids were making my skin worse." During her withdrawals, she noticed that her eczema and keratosis pilaris would act up. Then, she began to experience what she describes as a "bone deep itch," blisters that would crust over before falling off, and oozing skin. "My nipples [would stick to] my bra," she adds.

As things got worse, she developed a laundry list of symptoms: blurry vision, a type of swelling known as edema, and the feeling of a burning sensation after applying moisturizer or coming into contact with water. "I was experiencing insomnia, hair loss, depression, and chills," she says. "My skin was extremely dry and flakey, and currently the skin around my mouth tears open when I laugh, eat, yawn, brush my teeth, or talk." Dr. King confirms that some common TSW symptoms include red, burning skin, rosacea, or perioral dermatitis. Severe itchiness, burning, redness, and peeling can also occur, says Dr. Engelman.

"My skin was extremely dry and flakey, and currently the skin around my mouth tears open when I laugh, eat, yawn, brush my teeth, or talk."

Jayne cites similar symptoms of TSW. "My body was becoming increasingly more red, especially my face, and there were raised red lumps of skin," she says. "At my worst, I have been covered from head to toe in red, sore, itchy skin. Parts of my body would ooze plasma, I’d barely have to scratch and they would ooze as my skin barrier is so fragile. I have also suffered a lot from edema, especially in my face and around my eyes."

Dr. King says there is no current "cure" for TSW, and most doctors cite prevention of steroid withdrawal as the best way to avoid symptoms. "People can very slowly wean off of topical steroids, allowing the skin time to adjust with each stage of withdrawal, or they may opt to completely stop using topical steroids, antibiotics, cold compresses, moisture treatment, and oral corticosteroids," Dr. Engelman advises. 

But that point is moot for anyone who is already actively experiencing TSW. Dr. King suggests using cold compresses and moisturizing skin periodically for relief. Dr. Engelman notes that the recovery period for TSW can take well over three months. 

Khumalo says that she has found relief from TSW in cryotherapy. Both she and Jayne spend time in Dead Sea salt baths, which one study has found to be rich in magnesium and able to reduce skin inflammation. They also focus on limiting their intake of inflammatory foods. 

Unfortunately, Dr. King cannot recommend any of these treatments as a miracle cure. "I don’t think there is data to support [that any of this works], or to say they don’t work — there just isn’t data," she says. "But if someone finds these options to be helpful, I don’t think there is harm in trying them."

At times the mental aspects of TSW are harder to deal with than the physical ones.

Understandably, people who suffer from TSW note its debilitating psychological effects that compound on top of the physical and tangible aspects of living through it. “I have had to quit client-facing jobs and drop out of university,” Khumalo says. "My mental health has been severely affected — at times the mental aspects of TSW are harder to deal with [than the physical ones]. I have had thoughts of ending my life, and I became a hermit when I had a flare on my face. I avoided seeing anyone for a long time because I was ashamed of how I looked."

Topical steroid withdrawal can be an isolating condition, both Jayne and Khumalo say they have found community in Instagram communities forged through hashtags like #tsw, #thisisnoteczema, and #topicalsteroidwithdrawal. "People share experiences and support each other through withdrawal so you don't have to go through this alone," Khumalo says. 

Jayne adds that meditation and positive affirmations have also helped her get through the worst of TSW. "I use those to remind myself that this won’t be forever, and I am still beautiful, regardless of how this makes me feel."

Read more about eczema: 

• 6 Skin-Care Ingredients to Add to Your Routine If You Have Eczema
• How to Treat Scalp Eczema, According to Dermatologists
• Why Collodial Oatmeal Should Be Part of Your Skin-Care Regimen

Now, watch Aaliyah Jay's 10-minute beauty routine for dry skin:

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Tamim is a writer who lives (and will die) in New York. She writes about anything and everything, though she has a particular knack for beauty. Her days are spent cross stitching, watching '70s horror movies, smearing on eyeshadow, and bidding on estate sales from her bathtub.Contributor

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Keywordseczemaskin rashsensitive skinmental health