Clear Skin or Risk? The Steroid Dilemma for Eczema

Topical steroid addiction and withdrawal remains divisive among dermatologists but some families claim that quitting these creams was the key to recovery.

A growing cohort of parents, patients, and researchers are calling for wider recognition of topical steroid withdrawal. Illustration by The Epoch Times, Shutterstock

Kate learned about topical steroid withdrawal when her son Alex stopped growing, and she took him off his eczema cream.

Alex’s eczema, also known as atopic dermatitis, began in infancy with small, itchy patches on his wrists and hands—a condition Kate, a seasoned nurse, was familiar with. Following the doctor’s advice, she applied a mild corticosteroid cream. The relief was temporary.

As weeks turned into months, the rash persisted and spread, leading doctors to prescribe stronger steroid creams. While Alex experienced brief relief, the condition worsened each time the topical steroids were reduced.

Kate came to suspect that the topical steroids did more harm than good, and she noticed Alex had been wearing the same-sized clothes for an unusually long time.

Topical steroids are the default treatment for eczema, but many patients and parents may overuse these drugs when eczema doesn’t remit. Sukjai Photo, Hendra Sumatera, IrinaFoto/Shutterstock

His growth chart confirmed stalled growth—an acknowledged side effect of prolonged steroid use. An endocrinologist diagnosed Alex with linear growth retardation and advised stopping the steroids, though his dermatologist insisted such cases were “too rare” to be likely.

Kate has asked her name to be withheld, and that of her son. Her decision to stop his medication was supported by medical professionals but is still controversial in some circles. Some experts view taking children with serious eczema off topical steroids as a form of neglect.

For Kate, taking her son off topical steroids wasn’t an easy choice, but it was a step she felt was necessary. Her story highlights a growing debate over topical steroid withdrawal—a condition some experts acknowledge as a real side effect of prolonged steroid use, while others remain unconvinced. As more patients report similar experiences, the medical community is being pushed to reconsider the drugs that millions rely on for relief.

A Growing but Controversial Concern

Topical steroids are a cornerstone in dermatology, widely used to treat conditions like psoriasis and vitiligo. However, researchers have found that long-term use of steroids can itself trigger a skin condition, what one expert calls “topical steroid withdrawal syndrome.” This syndrome is distinct from the common side effects of steroid use, such as skin thinning and stretch marks.

Stories like Kate’s continue to spread, and researchers are better documenting the characteristics of topical steroid withdrawal. Yet many dermatologists and their professional associations remain unconvinced.

Kate stopped giving Alex topical steroids in June 2013. Within 15 months, she said Alex’s skin was 80 percent clear. He was later prescribed UVB narrowband phototherapy, a treatment using UVB light to reduce skin inflammation. After six months, his eczema was completely gone.

In her search for answers, Kate found a video by Dr. Marvin Rapaport, a dermatologist and former clinical professor at UCLA. For decades, Rapaport has warned that prolonged topical steroid use can lead to stubborn, treatment-resistant eczema. He has authored nine peer-reviewed papers on the topic and states he has cured over 10,000 patient in the past 40 years.

Kate’s concerns are far from unique. A 2022 study found that social media discussions on topical steroid withdrawal more than tripled between 2016 and 2020, reflecting rising public awareness of the issue.

Still, the medical community remains divided.

The Association and the Academy

While the National Eczema Association recognizes topical steroid withdrawal (TSW), many frontline dermatologists, backed by the American Academy of Dermatology (AAD), remain unsure about the condition’s prevalence and underlying causes.

“FDA [U.S. Food and Drug Administration]-approved topical corticosteroids have been shown to be safe and effective for treating dermatologic conditions, including atopic dermatitis,” wrote AAD president Dr. Seemal R. Desai in a statement to The Epoch Times. He pointed to the AAD’s “Guidelines of care for the management of atopic dermatitis in adults with topical therapies,” which highlight that current evidence for topical steroid withdrawal remains low to very low, based on two recent systematic reviews.

Still, both reviews recognize the condition and suggest that it may stem from the misuse of topical corticosteroids.

The first review, published in the AAD’s Journal of the American Academy of Dermatology in 2015, concluded, “TCS [topical corticosteroid] withdrawal is likely a distinct clinical adverse effect of TCS misuse.” The second, published in the Journal of Dermatological Treatment in 2021, advised, “Topical corticosteroid withdrawal should be suspected in patients presenting with prolonged usage, erythema, and burning or itch.”

Dr. Peter Lio, a lead researcher on the first study, told The Epoch Times that health authorities in the UK and Canada have formally recognized TSW. However, he remains uncertain about the position the AAD will ultimately adopt.

Eczema or Withdrawal?

The National Eczema Association notes that approximately 9.6 million children in the United States struggle with eczema, a rate twice that of children in other countries. More than 7 percent of adults are also affected, with one in four reporting their symptoms first appeared in adulthood.

Eczema, or atopic dermatitis, leaves the skin compromised to allergens that can trigger an immune response. Topical steroids work by suppressing this immune response. Designua/Shutterstock

Topical corticosteroids, or topical steroids, are the foundation of eczema treatment. Dermatologists prescribe them to reduce inflammation and manage flare-ups. However, while these drugs initially relieve symptoms, some patients report a diminishing effect over time, requiring stronger doses. While many people tolerate topical steroids well, others do not. When some stop using them, their skin rebels, resulting in topical steroid withdrawal. Common symptoms include large patches of red, inflamed skin.

A recent pilot study from the National Institutes of Health found that TSW is distinct from eczema. The study concluded that long-term steroid use disrupts how cells produce energy, contributing to the intense symptoms of TSW.

“Clinically distinct TSW symptoms included burning, flushing, and thermodysregulation,” notes the study. The researchers also noted metabolic abnormalities, particularly involving amino acids, and suggested that treatments like metformin and the herbal compound berberine might aid recovery.

Commander Ian Myles, chief medical research officer, U.S. Public Health Service Commissioned Corps, summarized the findings in a YouTube video 5 months ago.

People who had used topical steroids for months or years described “full body flushing” and symptoms in areas never treated with steroids, he said. They reported sagging skin folds and excessive peeling, which far exceeded typical eczema-related peeling.

While the authors of the pilot study noted that questions remain, they had one clear conclusion: “TSW is not eczema.”

Dr. Alpana Mohta, a board-certified dermatologist, explains that withdrawal symptoms include heightened temperature sensitivity, visible blood vessels, thin skin, the “red sleeve” effect, “elephant wrinkles,” and a metallic scent from oozing skin. Symptoms can appear in areas never directly treated with steroids.

“Erythema and skin pain or burning are the 2 most consistent clinical features of topical corticosteroid withdrawal in all patients,” wrote Mohta.

Previous studies have proposed several theories behind TSW symptoms. One study suggests that long-term steroid use disrupts the skin barrier, leading to reduced moisture retention and inflammation. When the drug is stopped, the skin’s moisture levels drop, causing dryness, irritation, and peeling.

Alex developed what is informally known as “red skin syndrome” after his mother stopped applying topical steroids. A common symptom of topical steroid withdrawal, it begins after topical steroid treatment is discontinued and can last for several months. Red skin syndrome presents with red, inflamed skin typically covering a larger area than the untreated eczema. Supplied photo

Rapaport suggests that prolonged steroid use raises nitric oxide levels, keeping blood vessels dilated and increasing blood flow to the skin’s surface. This, he says, causes the persistent redness and burning typical of steroid addiction.

A 2023 Journal of Integrative Dermatology article explains that as steroids are discontinued, rising nitric oxide levels cause blood vessels to widen, leading to the severe redness and irritation characteristic of TSW.

Disagreement Among Dermatologists

The term “topical steroid addiction” is contentious even among those who think topical steroids may be creating problems. Some suggest the term confuses the nature of the issue, while those like Rapaport believe it captures an essential dynamic in how people become physiologically dependent on drugs that offer little benefit.

Rapaport’s concerns over topical steroids are shared by more researchers, doctors, and families now than a few decades ago, yet he remains an outlier among dermatologists.

Dr. Lio, a Harvard-trained dermatologist, says TSW is a complex condition.

“TSW represents a serious challenge in dermatology right now. I have no doubt that it is a real entity and that we need better tools to diagnose, treat, and most importantly, prevent it,” he told The Epoch Times in an email.

While some TSW symptoms differ from those of eczema, Lio notes there is overlap, which complicates diagnosis.

“It is not quite as straightforward as diagnosing a skin disease because it is more than that: It is a systemic syndrome. We still have much to learn about it,” Lio said. He refers to it as TSW syndrome—a collection of symptoms that consistently occur together and affect multiple parts of the body—a term he believes is crucial for advancing understanding and treatment of the condition.

Dr. Amy Paller, a dermatologist at Northwestern University’s Feinberg School of Medicine, is among a large number of dermatologists who remain skeptical about topical steroid withdrawal.

“I have never seen this in any of my patients,” she wrote in an email to The Epoch Times.

Paller said that TSW is extremely rare among the pediatric patients she treats. She emphasized the importance of moderate steroid use and vigilant monitoring to avoid adverse effects.

“My colleagues have not or have rarely seen it in children. That’s the bottom line,” she said.

There are no readily available statistics to suggest how many people may suffer from TSW nor how rare the condition may be.

Phobia or Side Effects

Patients experiencing systemic effects from topical steroids, or fearing such outcomes, often report feeling misunderstood or dismissed by health care providers.

​​Concern over potential side effects from topical steroids is commonly labeled “steroid phobia” or “corticophobia” in medical circles—terms that describe an exaggerated fear of these treatments.

A study in the American Journal of Clinical Dermatology found that this fear affects between 31 to 95.7 percent of patients globally—regardless of race or skin condition.

“Steroid phobia negatively impacts treatment and can increase rates of non-adherence when it comes to treating AD [atopic dermatitis] with TCS,” wrote a 2022 study.

Dermatologists often use the TOPICOP questionnaire to measure steroid phobia. The survey evaluates patients’ fears, asking questions like whether they believe topical steroids can enter the bloodstream or cause weight gain.

While the survey assesses patients’ beliefs, it does not capture their actual experiences with topical steroid use.

A 2023 study in Annals of Allergy, Asthma & Immunology examined the effects of long-term steroid exposure.

“Individuals with eczema may have substantial lifetime corticosteroid exposure, increasing the risk of corticosteroid-related side effects,” the study noted.

The research, surveying 1,889 adult eczema patients and 271 caregivers of children with eczema, found that 83 percent of adults and 64 percent of children reported worsening symptoms over time.

A key finding from the study was the extended duration of topical steroid use by many patients. According to the research, 75 percent of eczema patients use topical steroids daily, with half using them 15 to 30 days each month. Adults averaged 15.3 years, and children 3.6 years of continuous use.

The study found that prolonged and frequent corticosteroid use was linked to new symptoms and conditions, with many participants reporting withdrawal symptoms upon stopping treatment.

Patients reported a variety of reasons for quitting topical steroids, ranging from seeing no improvement to developing new symptoms, in a survey of eczema patients. The Epoch Times

A 2021 article in American Family Physician noted that side effects of topical steroids can include cataracts, glaucoma, adrenal suppression, high blood sugars, hypertension, decreased growth rate, and Cushing syndrome.

Adrenal suppression occurs when the body’s natural production of cortisol drops after suddenly stopping steroids, while prolonged use can lead to Cushing syndrome—characterized by high cortisol levels and physical changes like increased upper back fat, often called a “buffalo hump.”

Problem of Prolonged Use

Those facing topical steroid withdrawal are fighting on two fronts, warns Kelly Barta, president and executive director of the Coalition of Skin Diseases and author of “To Eczema, with Love.”

“You’re not just treating eczema. You’re treating eczema plus immune dysfunction,” she told The Epoch Times.

Barta, who began using these creams in her early teens, found herself “chasing eczema” across her body, requiring increasingly potent treatments. Eventually, she was forced to confront the severe withdrawal symptoms that followed her decision to stop using the creams.

“It felt like someone was stabbing me with knitting needles,” she said. The intense pain and debilitating condition left her bedridden for over a year. Eventually, the symptoms eased, and her skin began to clear.

Kelly Barta (L) was hospitalized with eczema herpeticum, an issue some people withdrawing from topical steroids face. Courtesy of Sarah Bultman

Despite evidence of widespread overuse, the AAD offers no specific guidance on how long topical steroids should be used. Dr. Bruce Brod, a board-certified dermatologist, acknowledges this gap but said dermatologists are well-trained to prescribe steroids safely.

“Guidelines for inflammatory skin conditions contain language directed to safe and effective treatment regimens using topical steroids, including short duration use to prevent flares and side effects from prolonged use of high potency steroids,” Brod told The Epoch Times in an email.

Without specific guidelines on duration, treatment practices can vary widely. Brod noted the importance of educating patients on proper steroid use and balancing flare control with minimizing long-term exposure.

Family doctors and non-dermatologists, such as those in emergency rooms or urgent care, also prescribe topical steroids but may not be fully updated on the latest guidelines. This can lead to extended use and a higher risk of side effects, including steroid withdrawal. Ensuring all health care providers are informed on current recommendations can help reduce these risks, according to Brod.

“Every decision needs to balance the pros and cons and involve the patient in informed decision-making,” Brod said.

The 2021 review cited by the AAD recommends patient education to prevent improper steroid use and calls for more research into treatment methods and risk factors.

Decoding Dosages

Topical steroids frequently come without specific dosage guidelines, creating confusion over safe usage. Instructions often state, “Apply a thin layer only to the affected area,” yet don’t clarify what a “thin layer” or “affected area” means.

Alex’s mother, Kate, shares these concerns. Steroid labels often advise, “Use as directed by a doctor,” but Kate says doctors don’t always provide specific guidance, leaving patients holding the bag.

Research shows a general lack of awareness regarding the potency levels of topical steroids. categorized from Group 1, “ultra-high potency,” to Group 7, “low potency.” The percentage on the label does not necessarily indicate the strength of the steroid. For example, clobetasol propionate at 0.05 percent is up to 600 times more potent than hydrocortisone at 0.5 percent.

In the study, misunderstanding dosage was common. In total, 8 percent of participants using highly potent TCS mistook them as mild, and 27 percent using mild TCS thought they were potent or very potent.

Steroid potency can also vary depending on the patient’s age, skin condition, and the area of skin where the cream is applied.

Patients often receive conflicting advice from different doctors. A 2023 study found major discrepancies in the dosages and strengths of prescribed topical steroids, resulting in multiple and sometimes conflicting prescriptions that can lead to inconsistent treatment. Dermatologists tended to prescribe higher doses than family physicians.

Advocates are calling for clearer labeling and improved guidelines to make topical steroid use safer. In 2022, a Change.org petition urged the U.S. Food and Drug Administration to require detailed usage guidelines and explicit warnings about the risks of improper use.

In 2023, the British Association of Dermatologists issued an open letter urging the UK’s Medicines and Healthcare products Regulatory Agency to require clear potency labeling on all topical steroid products.

“Clearer potency labeling would help improve patient adherence, mitigate the risk of adverse effects, and enable a more balanced debate about topical steroids among patients and healthcare professionals,” they wrote.

A Diagnostic Dilemma

Skepticism about TSW means that many dermatologists don’t know how to diagnose it. While the National Eczema Association recognizes TSW as distinct from atopic dermatitis, the absence of formal diagnostic criteria complicates its identification and management.

In his practice, Lio uses the following determinants to distinguish between TSW and severe eczema:

• Burning, stinging, or painful skin versus the more common symptom of itch, which is related to eczema
• A “red sleeve” pattern, defined as confluent or general redness, on the arms or legs, often accompanied by severe swelling compared with the “patchiness” often seen accompanying
• Substantial or escalating use of medium- to high-potency topical steroids or oral steroids

The International Topical Steroid Awareness Network (ITSAN) has proposed an ICD-10-CM code for topical steroid withdrawal, currently under review by the U.S. Centers for Disease Control and Prevention (CDC). An ICD-10-CM code will allow physicians to bill directly for TSW and promote clinical research on the condition.

If approved, the code could be implemented by October 2025, potentially standardizing TSW diagnosis. ITSAN believes this would enhance TSW management, boost health care provider awareness, and improve data accuracy.

Illustration by The Epoch Times, Shutterstock

Without clear diagnostic guidelines, many patients resort to self-diagnosis. A 2023 study in Clinical and Experimental Dermatology found that patients often feel dismissed by dermatologists, leading them to seek help from unregulated online sources, which worsens their mental, social, and physical struggles.

The psychological toll of TSW can be profound. Research in Clinical and Experimental Dermatology found that some patients experience depression, anxiety, and even thoughts of suicide.

Weighing the Treatment Options

The National Eczema Society reports that 80 percent of children are expected to “outgrow” atopic dermatitis by adolescence or adulthood.

Uncertainty about the side effects of topical steroids may cause parents and physicians to hesitate when choosing how best to treat eczema.

Monoclonal antibody drugs like Dupixent, approved by the FDA in 2017, have emerged as new options for treating moderate to severe eczema in patients as young as six months who haven’t found relief with conventional therapies.

However, at a list price of $3,803.20 per carton, these drugs are out of reach for many, and their long-term effectiveness is still being evaluated. The FDA notes that biologics like Dupixent can have side effects, including severe allergic reactions and eye issues such as pink eye and corneal inflammation. Other common side effects include reactions at the injection site, cold sores, and high white blood cell counts.

Another emerging option is a class of medications called JAK inhibitors, which may reduce inflammation for eczema and other skin conditions.

For most patients, treatment choices come down to a range of alternative remedies or topical steroids, though long-term users may eventually need help managing withdrawal symptoms.

According to Rapaport, patients undergoing withdrawal under a physician’s care often endure “tolerable” symptoms, allowing for some normalcy. Withdrawal treatments typically include medications for itching, burning, sleep issues, and anxiety, as well as psychological support.

Rapaport notes that recovery time from topical steroid addiction varies widely and is poorly defined, though most patients see significant improvement within 12 to 24 months.

ITSAN advises against abruptly discontinuing steroids and recommends developing a cessation plan with a physician. This careful approach helps prevent severe complications, such as adrenal suppression.

A Lingering Question and Hope for the Future

Over the past decade, Alex has remained “100 percent” clear, with only mild spring flare-ups that are “nothing like the TSW-affected skin.” Kate recalled one dermatologist saying Alex had the “third worst case” of eczema she’d ever seen. She questioned why his condition worsened over three years of treatment but improved within 20 months of being off steroids.

“I truly would love to know the explanation,” she said.

Amid the ongoing debate, some in the medical community are hopeful TSW will become a thing of the past.

“Good stewardship of corticosteroids and appropriate advancement to systemic (non-steroidal) therapies, as well as being respectful of patient wishes, should be enough to get us most of the way there,” said Lio.

He is optimistic that awareness of TSW is growing even as new drugs to treat eczema get closer to market.

“I am hopeful that TSW will be relegated to the history books in our lifetime.”