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What Is Topical Steroid Withdrawal? If You Have Eczema, Here's What You Should Know.
Nurse Kathryn Tullos immediately noticed something was different about her youngest son's eczema symptoms. She and her three other children had all suffered from eczema, so she was well-acquainted with the condition and steroid cream used to treat it.
At first, a stronger topical steroid treatment prescribed by a pediatric dermatologist helped, Tullos says. But then stinging red rashes started to appear all over his body, and wouldn't go away. "That's when I was kind of like, alright, this doesn't look like eczema anymore…in my mind, it looked like he's resistant to the drugs."
These symptoms, Tullos would eventually conclude, were indicative of something different than eczema—a skin condition that has been gaining traction online known as topical steroid withdrawal (TSW).
TSW refers to a severe outbreak of skin inflammation that some believe to be caused by prolonged use or abruptly discontinued use of topical steroids. First introduced in a 1979 paper, discussion of TSW has exploded online in the last decade. Graphic personal testimonials about the dangers of topical steroid addiction have gone viral on social media, bringing renewed attention to the mysterious symptoms.
Whether TSW symptoms are a flare-up of underlying skin conditions or a separate condition linked to prolonged steroid use remains poorly researched and hotly debated. Experts shed some light on what we do and don't know about the condition so far.
Topical steroid withdrawal remains undefinedSince they were introduced in 1951, topical steroids have become the go-to treatment for inflammatory skin conditions, most commonly eczema. Usually applied as a cream, lotion, or ointment, the drug penetrates the skin and suppresses inflammation in the affected area. Topical steroids are one of the most widely prescribed drugs in dermatology.
"They're reliable, affordable, and generally pretty safe, particularly in the short-term," says Peter Lio, a clinical assistant professor of dermatology at the Northwestern School of Medicine and board member of the National Eczema Association. Though the exact duration for using topical steroids varies by patient, he uses no more than two weeks in a row and fewer than 14 days per month as a rough rule of thumb.
In the longer-term, however, problems can start to arise. Prolonged or overuse of topical steroids can cause rosacea, skin thinning, stretch marks, says Bruce Brod, a clinical professor of dermatology at the University of Pennsylvania's Perelman School of Medicine, and some attest, an extreme and debilitating withdrawal. TSW sufferers have described widespread redness, burning, swelling far beyond their normal eczema symptoms, and in some cases, skin lesions and infection.
A colored scanning electron micrograph (SEM) shows skin effected by eczema, in which the outer layer of the skin grows very rapidly and is easily shed—most often resulting in redness, swelling, itching and dryness, flaking, blistering, cracking, or bleeding.
Micrograph by STEVE GSCHMEISSNER, SCIENCE PHOTO LIBRARY
Leading eczema researcher Emma Guttman-Yassky says this is often the result of misusing topical steroids or stopping treatment abruptly. The medicine isn't meant to be used indefinitely because of the potential for skin damage, and as with oral steroids, patients should gradually taper off use, says Guttman-Yassky, chair of the dermatology department at Mount Sinai's Icahn School of Medicine. She typically recommends weaning patients off topicals after four weeks, "particularly the moderate to high potency" strength.
But many patients don't get this information about dose and duration, Tullos says. "I was never told any dose or, or how to use it." Only in reading the fine print on the product label and in published clinical trials did she learn about the potential side effects from using topical steroids on more than 20 percent of the body and for a prolonged period.
Some doctors, like Brod, have begun to diagnose TSW in patients—but with difficulty. "There's a broad spectrum of presentation…That's part of the problem: There's no distinct clinical marker. There's no biomarker. There's no specific lab test."
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Are topical steroid withdrawal symptoms a flare-up of a preexisting condition?Aaron Drucker, a dermatologist and associate professor at the University of Toronto, says hearing stories of bad reactions to topical steroids "runs counter to our experience" that they have been used safely and effectively for decades.
Guttman-Yassky believes that explaining these symptoms as "withdrawal" from steroids is inaccurate. TSW, as it's been described, is "an exaggerated concept…and many of the people that put that notion forward are not necessarily dermatologists."
A major problem is inappropriate use of topical steroids alone in cases of severe eczema, she says. In most instances, patients who have come to her with TSW symptoms see improvement through finding a new course of treatment that attacks the underlying inflammation at a systemic level.
"Topical steroids are good to suppress disease when patients have limited disease," she says. But when the condition is systemic rather than localized, meaning more than 10 percent of the body surface area is affected, liberally applying steroids will "just mask the problem" until the symptoms become too severe for the topicals alone—or flare up immediately upon stopping the drug. "If you have a patient who has multiple lesions, you're chasing your tail," she says. In that case, a different intervention is needed, such as biologics or JAK inhibitors, which mediate inflammation at the systemic level.
Alternative treatment worked for Tullos' son. After he was taken off topical steroid treatments, his symptoms receded significantly, and after six months of ultraviolet light therapy, they disappeared altogether. "Knock on wood," Tullos says, "he's clear to this day."
The search for answersFear of topical steroids is hardly new; in fact, the phenomenon is so widespread it's been given an official name: corticophobia.
That distrust has driven many to search for answers and support in online communities, which has also amplified steroid phobia and raised concerns about misinformation.
Rather than relying on unverified sources, experts recommend that patients seek professional advice from dermatologists who specialize in eczema and other inflammatory skin conditions. "There's a risk of misbranding topical steroids as something that shouldn't be used, and that's not the case at all," Brod says. "It's all about education and appropriate use."
Meanwhile, patient advocates, like Tullos, are trying to raise awareness and fund research into TSW. As a board member of the International Topical Steroid Awareness Network, she's also lobbying for adding warning labels to topical steroids (such as those published by the United Kingdom), getting an official ICD-10 code, and building a long-term patient registry.
Many questions remain, such as how prevalent TSW-associated symptoms are, who is most likely to be affected, and how—if at all—to define the condition. New research is ongoing, including a study conducted by the National Institutes of Health looking at the tissue profiles of people who believe they're suffering from TSW. Preliminary results from the paper, which is now in preprint, suggest that TSW has clinically distinct symptoms—possibly due to a chemical irritation—and may indeed merit its own diagnosis.
For now, there's rampant confusion about whether TSW exists, among both patients and the public, Brod says. "It's a sort of a chicken or the egg theory. What comes first—the underlying condition or the topical steroid withdrawal or is it just a combination of the two?"
7 Treatments For Winter Eczema Flare-Ups
Using a humidifier and thick moisturizer when it's cold out can help relieve eczema flare-ups. But certain fabrics and soaps may make symptoms worse.
Eczema is a chronic inflammatory condition that causes dry, scaly, and itchy rashes on the skin.
It's common for people with eczema to experience symptom flare-ups during the winter, according to the National Eczema Society. These are periods when your symptoms worsen or reappear.
Eczema may flare up for several reasons, such as skin barrier dysfunction. The skin barrier is the outside layer of your skin. It's responsible for retaining moisture and protecting your skin from environmental irritants.
In the winter, several triggers could affect your skin barrier, leading to eczema flare-ups.
Here are seven tips to help you cope with eczema flare-ups during the winter.
Taking a warm bath during the cold winter months may seem like an easy way to warm up. However, hot water could cause your skin to dry out more quickly if you have eczema.
According to the National Eczema Association (NEA), properly bathing is an effective way to moisturize your skin. Instead of hot water, use lukewarm water and bathe for a maximum of 15 minutes.
Adding certain ingredients to a whole bathtub of water may also help improve skin barrier efficiency. These ingredients include:
It's important to have a post-bathing routine to help lock in moisture, especially in the winter months. The NEA suggests doing the following once you finish bathing:
Speak with a healthcare professional if you experience eczema flare-ups during the winter. They may recommend alternatives for your bathing routine.
If you have eczema, your skin is more likely to be sensitive to soaps and detergents.
The NEA recommends choosing body soaps and laundry detergents that don't contain fragrances, dyes, or alcohol. Some soaps and detergents are also formulated for sensitive skin.
If you're unsure about which soap to use, speak with a healthcare professional. They could recommend something for your condition.
Moisturizing is one of the most important parts of managing eczema, especially during the winter months. It could help improve your skin barrier function to retain moisture and relieve your eczema symptoms.
Consider applying a thick moisturizer during the winter, as this may be better than a lotion. Some options are available over the counter (OTC), such as petroleum jelly.
The NEA also recommends applying a thick moisturizer within 3 minutes of bathing.
If OTC moisturizers don't help your symptoms, speak with a healthcare professional. They may prescribe a topical treatment with medication, such as a cream containing hydrocortisone.
Remember to moisturize at least two times per day.
Some clothing materials may irritate your skin and cause eczema symptoms to worsen.
These include fibers more common in winter clothing, such as wool, nylon, and polyester. The National Eczema Society suggests that these may cause overheating and sweating, which also leads to eczema flare-ups.
The clothing material typically recommended for eczema is 100% cotton. Other options include bamboo and silk.
Try eliminating unnecessary layers on your bed and make sure bed linens are made from breathable fabrics, too.
One of the biggest culprits of eczema during the winter is low humidity indoors, which may result from heating systems. These could take the moisture out of the air and dry your skin.
Consider using a humidifier to add moisture back into the air. There are portable humidifiers as well as ones that you can hook up to your heating system.
It's important to properly maintain and clean your humidifier to avoid bacteria and fungi growth that could exacerbate eczema symptoms.
Keeping your body hydrated can help keep your skin hydrated. Drink at least eight glasses of water per day to help moisturize your skin.
Slice up lemons or other citrus fruits and add them to the water for a mild flavor.
Taking vitamin D supplements in the winter may help relieve eczema flare-ups, according to the NEA. Vitamin D may have several benefits, such as:
That said, speak with a healthcare professional before taking vitamin D supplements. They may recommend an alternative supplement that could be better for you.
What triggers eczema in winter?Some common eczema triggers in the winter include low humidity air outside, dry air indoors from heating systems, and clothing materials like wool.
What ointment is good for winter eczema?The NEA recommends choosing an ointment that feels greasy or oily. These usually contain more oil, which could help retain moisture in your skin. Skin barrier creams like petroleum jelly are also good options.
How long does winter eczema last?The duration of eczema flare-ups during the winter will vary for each individual, ranging from a few days to multiple months. Several factors may affect how long you experience symptoms, such as what triggers your symptoms and the climate you live in.
The cold, dry air during the winter months could cause eczema to flare up.
However, creating a daily routine with these seven tips may help you manage the itching, pain, and rashes often associated with the skin condition.
If your symptoms persist, speak with a healthcare professional. They could help develop a treatment plan for managing eczema flare-ups during the winter.
How To Tell It's Time To Switch Treatment For Your Severe Eczema
You may need to switch treatments for severe eczema (atopic dermatitis) if your symptoms often disrupt your daily activities or are getting worse.
You apply moisturizer around the clock and avoid allergens. Yet you haven't experienced relief from the itching, scaling, and dryness of eczema as you'd hoped.
This may be a sign it's time to reevaluate your treatments. While it's true there's no cure for eczema right now, many treatments are available to help manage symptoms.
Eczema treatment isn't a one-size-fits-all approach. It's important to know when your treatment isn't working, even if it has worked well in the past.
Here are some signs it's time to contact your dermatologist or change your home regimen.
When you've been a little lax with your treatment regimen, you can expect to have some periods of dry, itchy skin. Sticking with your current regimen can help ease some symptoms.
Sometimes, eczema treatment may work for a while, but your eczema may stop responding to it as well. In this case, you may need another treatment.
You may need to talk with your dermatologist if you have certain symptoms despite treatment. These can include:
If you feel your dermatologist isn't managing your eczema as well as they could, talk with them. You could also look for a new dermatologist who specializes in eczema treatments.
Innovations and research on treatments for eczema are ongoing, which means there are a growing number of treatments available.
Sometimes, finding a new treatment can be a matter of trying different options. It can also mean trying combinations of treatments to find the ones that are the most effective.
Emollients (moisturizers)People with eczema typically need to apply moisturizers at least twice a day. Depending on your occupation and eczema type, you may need to apply moisturizers more often.
If you're currently using a lotion as a moisturizer, consider upgrading to a cream or ointment. The thicker consistency means there's more oil that holds moisture in it. The moisturizer should be free of fragrances and dyes.
Topical steroidsDoctors may recommend topical steroids alone or in combination with light therapy. These medications help reduce inflammatory skin reactions that can lead to eczema symptoms. But using topical steroids frequently can make them less effective over time.
Topical immunomodulatorsPimecrolimus (Elidel) and tacrolimus (Protopic) are two immunomodulatory medications applied to the skin. They interfere with inflammatory compounds and can be especially helpful in treating eczema on the face, genitals, and areas of folded skin.
However, they can have more side effects than topical corticosteroids.
Wet wrapsWet wrap bandages are a special wound care approach to treating severe eczema.
Doctors recommend only using this treatment under the supervision of a trained medical professional, such as a doctor or nurse. It may require admission to a hospital.
AntihistaminesAntihistamines can lower the amount of histamine in your body. Histamine causes your skin to itch. Antihistamines are usually more effective in treating eczema in children, but they may also be effective in reducing symptoms in adults.
PhototherapyPhototherapy involves exposing the skin to UV light to help ease symptoms. Medical professionals perform phototherapy in a medical setting, so it may require frequent appointments, such as several days a week for a few months.
After the symptoms go away, people undergoing phototherapy often have less frequent appointments.
Oral medicationsThe Food and Drug Administration (FDA) has approved many oral eczema treatments, including oral corticosteroids for short-term flare-ups and immunosuppressing medications for treating moderate to severe eczema.
Injectable medicationsIn March 2017, the FDA approved the use of dupilumab (Dupixent), an antibiotic that helps lower inflammation, for eczema. Doctors use this drug to help treat moderate to severe eczema.
Clinical trials for additional injectable medications are currently underway.
Behavioral counselingSome people take part in behavioral counseling sessions to change their itching and scratching behaviors. You can also use these sessions to learn about stress reduction and management, as stress can worsen eczema symptoms in some people.
If a treatment sounds particularly promising to you, talk with a doctor. Questions you may wish to ask about treatment options include:
Checking in with your doctor about your eczema can ensure your treatment plan effectively treats your eczema. While eczema may not go away fully, a change in treatment may improve your quality of life.
If you're still regularly having bothersome symptoms of eczema despite treatment, it may be time to talk with a doctor about changing your treatment plan. A doctor may recommend a change in dosage or a new medication altogether.
If you're going to be starting a new medication, be sure to ask your doctor about possible side effects and what to look out for.
Researchers are currently exploring additional treatments for severe eczema that may help reduce flare-ups and improve your quality of life.
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