In March, Megan Crome was diagnosed with withdrawal from topical steroids.
Actual steroid withdrawal can occur in people using steroid creams for conditions such as eczema.
It's a misunderstood disease, meaning that people like Crome often turn to social media for help.
Megan Crome lay on a makeshift sofa bed at her mother's home in Essex, England. It was the spring of 2021 and her face was swollen and covered in hard, itchy scabs that she scraped off in her sleep, reopening the sores and starting the painful cycle over and over again.
The 25-year-old loved to go out and enjoy life, but for the past six weeks she hasn't been working, robotically moving from her bedroom to the sofa bed while her mother looked after her.
According to Dr. Marvin Rapaport, a physician who claims to have cured 7,000 people of the disease.
Topical steroids are creams, lotions, and gels used to treat irritated and inflamed skin caused by conditions such as eczema, dermatitis, and psoriasis. The National Eczema Association says there is no affordable alternative to these cheap drugs that work.
Some doctors do not believe that this condition is present.
Awareness of this condition, also known as local steroid addiction or red skin syndrome, has increased in recent years. This is partly because people share their experiences on social media, especially on TikTok, where the hashtag #topicalsteroidwithdrawal has at least 600 million views and videos about the illness appear in user feeds.
Rapaport said topical steroids can cause itching, burning, and a rash, as well as a red rash that progresses to initial inflammation elsewhere in the body.
When patients stop using steroids, they may experience symptoms such as swollen lymph nodes, dry and irritated eyes, insomnia and fatigue, feelings of unsteadiness, previously undiagnosed depression or anxiety, nerve pain, and increased sensitivity to water.
Despite the severity of the condition and its association with overuse of steroid creams, the lack of research means important information such as the cause, how many people have the condition, and why it only affects some steroid cream users. Studies show that doctors don't know how often patients should use these creams, or don't tell them about the risks.
One theory is that the withdrawal of topical steroids may be caused by the body's response to a sudden lack of topical steroids in the body, which causes changes in the blood vessels that regulate skin temperature.
Celia Moss, now a steroid withdrawal researcher and volunteer dermatologist in Birmingham, England, said the situation has not improved because dermatologists either didn't know about the condition or suspected it existed.
Patients with severe eczema that returns after stopping topical steroids may be misdiagnosed, he says.
This means that people are not getting the support and treatment they need and are forced to seek help from less reliable sources of information, such as social media.
People may have trouble withdrawing topical steroids for many years.
In March, a doctor diagnosed Crome with topical steroid withdrawal, two years after she diagnosed herself online.
In February 2021, Crome took a break from the topical steroid creams she had been using for 18 years to treat herpes eczema on her face. The symptoms of eczema worsened: the skin became red, dry and flaky.
It wasn't the first time she had unexpected symptoms after stopping the creams. He has had "red sleeves" in the past, a common symptom of current steroid withdrawal, which makes the person look like he's wearing a red shirt and his face is swollen like a "big red balloon."
But the doctors she spoke to referred her to a dermatologist, who prescribed a protopic, an immunosuppressant for eczema, or a stronger steroid cream.
The National Eczema Association says there is no optimal treatment plan for the condition, but Crome had to stop using topical steroids in order for her skin to heal. Some people may also benefit from certain medications, but more research is needed. Recovery often takes more than three months, according to one analysis, but some people can struggle for years, according to the National Eczema Association.
Rapaport said that stopping topical steroids is like any other addiction, and in order to be cured, you need to stop using steroid creams: “Addiction is addiction. If you are an alcoholic, stop drinking.
Desperate for answers, Krom posted her symptoms to an eczema support group on Facebook, where she was inundated with comments diagnosing steroid withdrawal both protopic and real: her body was addicted to creams that were supposed to help her.
Finally, it looks like he had an answer.
She stopped using the creams the same day, but had no idea how bad it would be.
"I felt like I was on my deathbed"
According to Crome, the first six months after removing the creams were "absolute hell."
At first, her skin was painfully dry and her face swollen. His skin wept at night and dried up in the morning, turning into scabs.
A few weeks later, Crome woke up in pain and was unable to move. Her boyfriend had to bandage her hands, feet and face the night before so she wouldn't get scabies in her sleep.
Her parents were visiting and started crying when they came in and saw her lying on the bed wrapped up "like a zombie".
“It was like I was on my deathbed, it was terrible,” he said.
Krom took a sick leave, left London and lived with her family for the third and fourth months so that her mother could take care of her.
“You can't pay me a hundred million pounds to go through this again. It was like torture,” Crome said.
Despite the pain, Crome was motivated to get through the first year of true steroid withdrawal with the support of Facebook groups.
“I joined the Facebook group,” he said. "Most of the time they were more helpful than the doctor."
The groups suggested remedies, such as Dead Sea salt baths, which helped ease some of the pain she initially experienced.
Rapaport said some medications could be helpful, but he also saw people suggest "quite strange" treatments ranging from "acupuncture to headstand." He said that these people need medical attention.
Dr. Peter Lio, professor of clinical dermatology at Northwestern University, told the National Eczema Association, “It started with a dermatologist you can trust.
"If this site is not helpful, please contact ITSAN or the National Eczema Society to find a doctor who can help you," referring to the International Steroid Awareness Network.
TikTok is a resource for people with this condition.
The outbreaks continued two years after she contracted herpes and stopped using creams, Crome had an open sore on her face, and she was constantly tired, which made her unable to communicate, especially since alcohol provoked her.
She began to lose her positivity.
But documenting her journey with her daily TikTok posts, which she has been updating regularly since last January, is helping her move on. As she watched her followers grow, she was motivated to bounce back.
He opened the account when the illness became a hot topic, and the platform quickly became a gathering place for a community of sleep deprived, suffering from illness, wearing red sleeves, bathroom cabinets full of creams with discarded steroids, and asking a lot of questions about what was with them. not right.
After two years of avoiding doctors as much as possible, Crome was thankful that a topical steroid withdrawal dermatologist made the diagnosis in March.
"After two years, I can't believe this is finally happening," Crome said on TikTok, showing the doctor's letter to the camera. "Black on white, diagnosis: current steroid withdrawal."
Rapaport said the current steroid withdrawal periods could be three to five years, but Crome said she was ready to take immediate action on the disease and sulphur, as well as the deal.
July 17, 2023 Correction: An earlier version of this story incorrectly reported Megan Crome's age. She's 27, not 26. She was bedridden by TSW at 25.
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