A 25-year-old ended up bedbound and covered in scabs from a skin condition that some doctors don't believe exists

• Megan Crome was diagnosed in March with a condition called topical steroid withdrawal.
• Topical steroid withdrawal can happen to people who use steroid creams for conditions like eczema.

Megan Crome was lying in a makeshift bed on the couch at her mom's house in Essex, England. It was spring 2021, and her face was swollen and covered with itchy, rock-hard scabs that she would scratch off in her sleep, reopening the wounds and restarting the painful cycle.

The 25-year-old used to love going out and enjoying life but had spent the past six weeks on leave from work, moving robotically from her bedroom to the bed on the couch while her mom looked after her.

Crome had topical-steroid withdrawal, a serious, rare, and poorly understood condition that can occur in some people who regularly use or stop using 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 that treat inflamed, irritated skin caused by conditions such as eczema, dermatitis, and psoriasis. The National Eczema Association says there are no affordable alternatives to these cheap drugs that work as well.

Some doctors don't believe the condition 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 on TikTok, where the #topicalsteroidwithdrawal tag has at least 600 million views and videos about the condition pop up on users' feeds.

Rapaport said topical steroids could cause an itching, burning, and stinging rash as well as a red rash that develops in other parts of the body from the initial inflammation.

When patients stop using the steroids, symptoms can include enlarged lymph nodes, dry and irritated eyes, insomnia and fatigue, emotions that can feel unstable, previously undiagnosed depression or anxiety, nerve pain, and hypersensitivity to water.

Despite the severity of the condition and its link to the overuse of steroid creams, a lack of research means that key information such as its cause, how many people have the condition, and why it affects only 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 suggests that topical-steroid withdrawal could be caused by the body reacting to a sudden absence of topical steroids in the system and triggering changes to blood vessels that regulate skin temperature.

Celia Moss, a topical-steroid-withdrawal researcher who is an honorary consultant dermatologist in Birmingham, England, said the situation wasn't helped by the fact that dermatologists were often unaware of the condition or doubtful it exists.

Patients can be misdiagnosed as having severe eczema that has returned after stopping the use of topical steroids, she said.

This means people cannot 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

A doctor gave Crome a diagnosis of topical-steroid withdrawal in March — 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, dry, and flaky.

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 symptom of topical-steroid withdrawal where it looks as if the person is wearing a red shirt — and her face had swollen up like a "big red balloon."

But the doctors she spoke with referred her to a dermatologist who prescribed Protopic — an immunosuppressant for eczema — or a stronger steroid cream.

The National Eczema Association says there's no optimal treatment plan for the condition, but Crome needed to be told to stop using topical steroids to allow her skin to heal. Some people can also benefit from certain medications, though more research is needed. One analysis says recovery often takes more than three months, but some people can struggle for years, according to National Eczema Association.

Rapaport said topical-steroid withdrawal was like any other dependency and she had to give up the steroid creams to get better: "Addiction is addiction. You're an alcoholic, you stop the alcohol."

Desperate for answers, Crome posted her symptoms to an eczema support group on Facebook, where she was flooded with comments diagnosing Protopic withdrawal and topical-steroid withdrawal: Her body was addicted to the creams that were supposed to be helping her.

Finally, it seemed she had an answer.

She gave up the creams the same day but was unaware of how bad things would get.

'It was like I was on my deathbed'

The first six months after ditching the creams were "absolute hell," Crome said.

Initially, her skin was painfully dry, and her face was swollen. Her skin would weep at night and dry into scabs by the morning.

A few weeks in, Crome woke up unable to move because of the pain. Her boyfriend had to bandage her arms, legs, and face the night before so she wouldn't scratch the scabs in her sleep.

Her parents were visiting and started crying when they walked in and saw her lying in bed wrapped up "like a mummy."

"It was like I was on my deathbed, it was horrible," she said.

Crome took sick leave from work, left London, and lived with her family in months three and four, so her mom could look after her.

"You couldn't pay me a hundred million pounds to go through that again. It was like torture," Crome said.

Despite the pain, Crome felt motivated to power through the first year of topical-steroid withdrawal, with the Facebook groups there to support her.

"I was committed to the Facebook group," she said. "They were more helpful than the doctor most of the time."

The groups suggested remedies — such as Dead Sea salt baths — that helped ease some of the pain she initially felt.

Rapaport said some remedies could be helpful but he had also seen people suggest "outlandishly outrageous" treatments from "acupuncture to standing on your head." He said these people needed medical care.

Dr. Peter Lio, a professor of clinical dermatology at Northwestern University, told the National Eczema Association: "Start with a trusted dermatologist. But, because it is relatively rare, many practitioners have never even heard about it.

"If that venue is not helpful, reach out to ITSAN or the National Eczema Association for help finding a practitioner who may be able to help," referring to the International Topical Steroid Awareness Network.

TikTok is a hub for people with the condition

As flare-ups continued two years after she got shingles and stopped the creams, Crome was left with an open wound on her face and was constantly fatigued, which left her no social life — not helped by the fact that alcohol made her flare up.

She began to lose her positive mindset.

But documenting her journey with daily posts on TikTok, which she started updating regularly in January last year, kept her going. As she saw her follower count rise, she felt motivated to recover.

She started the account when the condition had become a trending topic, and the platform soon became a hub for a community of sleep-deprived people with the condition who were experiencing red sleeves, had bathroom cabinets packed with abandoned steroid creams, and asked many questions about what was wrong with them.

After avoiding doctors as much as she could for two years, Crome was thankful when a dermatologist specializing in topical-steroid withdrawal gave her a diagnosis in March.

"Two years in, I can't believe it's finally happened," Crome said in a TikTok, showing a letter from the doctor to the camera. "In black and white, diagnosis: topical steroid withdrawal."

Rapaport said topical-steroid withdrawal flare-ups could continue for three to five years, but, for now, Crome said she would keep going in the hope that the condition would one day be just a memory.

Correction: July 17, 2023 — An earlier version of this story misstated Megan Crome's age. She is 27 years old, not 26. She was bedbound by TSW at the age of 25.