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Megan Crome was debilitated by a condition called topical steroid withdrawal.
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Topical steroid withdrawal can happen to some people who use steroid creams for conditions like eczema.
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TSW is a poorly understood condition, meaning people like Crome turn to social media for help.
Megan Crome was lying in a makeshift bed on the couch at her mom’s house in Essex, UK. It was spring 2021, and her face was swollen and covered in itchy, rock-hard scabs that she would scratch off in her sleep, re-opening the wounds and restarting the painful cycle.
Once someone who loved going out and enjoying life, the 25-year-old had spent the past six weeks on leave from work, moving robotically from her bedroom to the bed on the couch where her mom looked after.
Crome was in the midst of topical steroid withdrawal, a serious, rare, and poorly understood condition that can occur in some people who regularly use or stop using what are known as topical steroids on their skin, Dr. Marvin Rapaport, a doctor who claims to have cured 7,000 people of the condition, said.
Topical steroids are creams, lotions, and gels, which treat inflamed, irritated skin caused by conditions such as eczema, dermatitis, and psoriasis. According to the National Eczema Association, there are currently no affordable alternatives to these cheap drugs that work as well.
Some doctors don’t believe TSW exists
Awareness of the condition, also known as topical steroid addiction or red skin syndrome, has grown in recent years. This is partly thanks to people sharing their experiences on social media, particularly TikTok where the #topicalsteroidwithdrawal tag has at least 600 million views and videos of TSW sufferers pop up on users’ feeds.
According to Rapaport, the symptoms of TSW while a person is using topical steroids include an itching, burning, and stinging rash, and a red rash that develops in other parts of the body to the initial inflammation.
When patients stop using the steroids, symptoms can range from enlarged lymph nodes, dry and irritated eyes, insomnia and fatigue, to emotions that can feel unstable, previously undiagnosed depression or anxiety, nerve pain, and hypersensitivity to water, among others.
Despite the severity of the condition, a lack of research means that aside from its link with the overuse of steroid creams, key information such as its cause, how many people have TSW, and why it only affects some steroid cream users is unknown. Research suggests prescribers aren’t clear about how often patients should apply these creams or don’t make them aware of the risks.
One theory goes that TSW could be caused by the body reacting to a sudden absence of topical steroids in the system, triggering changes to blood vessels that regulate the temperature of the skin.
The situation isn’t helped by the fact that, according to Celia Moss, a TSW researcher and an honorary consultant dermatologist based in Birmingham, UK, many dermatologists don’t know what the condition is or believe it exists.
Patients can be misdiagnosed as having severe eczema that has returned after stopping using topical steroids, she said.
This means sufferers are unable to get the support and medication they need and are forced to turn to less reliable information sources, such as social media, for help.
People can struggle with topical steroid withdrawal for years
Crome was officially diagnosed with TSW by a doctor in March 2023 — two years after she self-diagnosed online.
In February 2021, Crome took a break from the topical steroid creams she had used to treat her eczema on and off for 18 years, because she had shingles on her face. Her eczema symptoms got worse: her skin was red, very dry, and flakey.
This wasn’t the first time she’s had unexpected symptoms after pausing the creams. In the past she’d had “red sleeves” — a common TSW symptom where it looks as if the person is…