Tips to help you prepare for your next trip on the open road if you live with eczema: planning ahead makes all the difference.
Published On: Mar 22, 2021
Last Updated On: May 5, 2021
National Eczema Association is committed to raising awareness about Topical Steroid Withdrawal (TSW), a serious potential side effect of topical steroid use that is not readily recognized by patients and providers. Much is still unknown about this condition, most notably how often it happens and the amount of topical steroid use that causes it to occur. While we believe topical steroids have a role to play in the management of eczema, it’s important for the eczema community to be aware of TSW.
Linette Roungchun has struggled intermittently with topical steroid withdrawal (TSW) for much of her adult life. “The majority if not all of people with TSW,” she says, “end up homebound, having to completely upend their lives, bringing all obligations – social, professional, etc. – to a halt. TSW is not for the faint of heart.”
The potentially debilitating symptoms of TSW can include burning, weeping, flaking, shedding, peeling, spreading, swelling, redness, wrinkling, thin skin, pus-filled bumps, cracking, itching, nodules, pain, insomnia, hair loss, shivering, fatigue, depression and disability.
“It touches every facet of your life,” explains Briana Banos, who has lived with the condition for years. “It means quitting jobs or needing some sort of physical and financial support — a burden left to a family member or spouse. Emotionally, it is unbearably exhausting, and causes an avalanche of issues: loss of self, passion, partners and peace. And, without being able to truly thrive out in the world (be it months to multiple years of isolation) a TSW sufferer can be impacted harshly with the destruction of their social life or social outreach. It is an indefinite prison sentence and a type of suffering I wouldn’t even wish on an enemy.”
While the prevalence of TSW is unknown, it can potentially have serious physical, emotional, social, and financial ramifications. Olivia Hsu Friedman, DACM, Dipl.OM, L.AC., Certified TCM Dermatology, who treats TSW patients explains, “This condition can degenerate to a place where a person is incredibly depressed, can’t function, can’t sleep and can’t hold onto a job. It can take them to a very dark place.”
But TSW doesn’t necessarily have to manifest like this. There are ways to help prevent it, and to make sure TSW is recognized, respected and treated appropriately.
Topical corticosteroids (TCS) have been used in treating eczema for more than 50 years and remain among the most effective, inexpensive and widely used drugs in dermatology, with no current, affordable alternative offering the same efficacy. They work directly with the body to reduce inflammation, and are closely related to corticosteroids made daily by the adrenal glands.
According to treatment guidelines developed in Europe, Asia and the United States, topical steroids remain the mainstay of treatment for adults and children with eczema, even in severe cases in which they may be used in combination with systemic therapies. Typically, topical steroids are recommended when eczema hasn’t responded to traditional eczema non-medicated skin care regimens.
Most people with eczema use topical steroids to help manage their symptoms without experiencing adverse events. But for some, TSW can arise as a complication of topical steroid use, even leading to symptoms significantly worse than their original skin condition.
The term “topical steroid withdrawal” (also referred to as topical steroid addiction or red skin syndrome) refers to a constellation of symptoms that may emerge in the days and weeks after a person stops using topical steroid medication. Due to a lack of research and no clear diagnostic criteria, it’s not yet known what amount of steroid use causes TSW, how many people have the condition and what percentage of people using topical steroids may develop it.
According to a systematic review of current medical literature on TSW published in the Journal of the American Academy of Dermatology and initiated by National Eczema Association (NEA):
“TSW is real,” says Eric Simpson, MD, Professor of Dermatology at Oregon Health & Science University. “It occurs most commonly in the setting of long-term and daily medium to high potency steroid use, especially on the face. While topical steroids can be effective in improving inflammation in the skin of patients with eczema, research has confirmed the need for avoiding daily long-term use of topical steroids. For patients needing longer-term management, incorporating non-steroidal therapies and using topical steroids only intermittently (such as twice per week), will likely prevent most cases of TSW.
“We as dermatologists need to do a better job educating patients about how to use TCS safely long-term and we as dermatologists need to be better at recognizing this adverse effect in our patients.”
Kathy Tullos, RN, is the president of ITSAN, The International Topical Steroid Awareness Network, a nonprofit focused on raising awareness about TSW and supporting those affected. She emphasizes that a basic need remains for the eczema community: to know that TSW exists and is a possibility, to try to prevent it and to know its early warning signs.
“There’s an invisible line,” says Tullos, “between your ‘typical’ eczema and TSW.” Noticing when you’ve crossed that line can be difficult but warning signs, according to Tullos, include symptoms:
Tullos’ hands and nearly her son’s entire body were afflicted by TSW at one point. “He had insane flaking,” she remembers, “like baking soda everywhere he sat. I had to vacuum his sheets daily.” Their TSW journey lasted 15 months. An analysis of numerous medical journal articles and studies related to TSW found that TSW recovery does often take more than three months. Anecdotally, sufferers sharing experiences online often recount years of struggle. Dr. Lawrence Eichenfield, Professor of Dermatology and Pediatrics at the University of California, San Diego comments that “we can probably help our patients with TSW with newer biologic agents or other systemic non-steroidal therapies. It would be good for some research to be done to show how we can improve the clinical state and the underlying immunologic processes.”
According to an article in Practical Dermatology, the mechanism behind TSW remains unclear. One hypothesis, the authors suggest, is that the phenomenon is due to “a rebound effect caused by the sudden absence of TCS leading to increased nitric oxide (NO) levels and exaggerated vasodilation of cutaneous blood vessels.”
Dr. Peter Lio is one of the authors of the Practical Dermatology article and a member of the NEA Board of Directors and Clinical Advisory Committee, as well as a Clinical Assistant Professor of Dermatology and Pediatrics at Northwestern University Feinberg School of Medicine and partner at Medical Dermatology Associates of Chicago.
“TSW is an incredible burden for sufferers,” he says, “but it can likely be prevented with careful stewardship for the vast majority of patients.”
“We don’t have accepted diagnostic criteria for TSW yet,” he notes. But in his own practice, Dr. Lio looks for three major things to distinguish between TSW and severe eczema.
“Awareness,” he says, “is key to understanding and preventing TSW. While TSW may be more common than we yet know, it seems to be preventable in at least the majority of cases. This gives hope that with widespread recognition of TSW and cautious use of topical steroids, we can take better care of people with eczema and hopefully send TSW back into obscurity.”
Banos, who has struggled with TSW for 6 years and is the creator of the TSW documentary “Preventable: Protecting Our Largest Organ,” says she wants to help people with eczema avoid TSW: “Ninety-five percent of the TSW community is from the eczema community. We don’t want anyone else having to spill over. I hope to see true education about to how to prevent this from happening to patients.”
Roungchun, Banos, and Tullos have all strived through social media and other platforms to help build a robust, supportive group of TSW “warriors” committed to increasing awareness of TSW, empowering others to be seen, heard and believed and collaborating with organizations like NEA, Health Union, Global Parents for Eczema Research (GPER), and the Allergy and Asthma Network (AAN) to improve acceptance and understanding of TSW.
“There has been a tremendous uptick in the TSW discussion in the past several years,” says Dr. Lio, “in part, I think, due to excellent online resources such as the documentary ‘Preventable.’ We are just starting to define TSW and we have a long way to go to understand it fully. We need to ensure we’re not over-treating with steroids and that we are open to leveraging the many non-steroidal options that are available – everything from powerful systemic anti-inflammatory medications – but also including natural botanicals, mind-body approaches and things like special fabrics that soothe the skin.”
“TSW is still a grassroots, patient-led diagnosis,” adds Tullos of ITSAN. “There is still denial from the medical community and efforts are still very much about raising awareness.” Tullos says more acceptance of those who don’t want to use topical steroids and more support for them to manage skin conditions in other ways would be very helpful. And, she says, it would be great to get to the point where the onus is not on the patient to recognize the signs and suggest TSW as a diagnosis. People are educating their doctors about TSW, she notes, which is necessary, but ideally more healthcare providers would recognize TSW and its warnings signs on their own.
If you think you have TSW, there are things you can do. Do research and reach out for support. ITSAN is a good place to start and provides resources such as links to medical and scientific articles and studies, a brochure to download and take to medical appointments, videos and more. You can also refer your practitioner to a section of the ITSAN website designed for doctors. Through ITSAN and other online resources you may be able to find referrals for healthcare providers who are knowledgeable about TSW and its management.
A standard approach to TSW recovery is to stop using topical steroids and allow skin to heal , though there is great variability in time, response, and symptoms using this approach. Evidence suggests that the medication dupilumab may help, but more research on this topic is needed, and the optimal strategy for TSW recovery has not yet been established.
“Start with a trusted dermatologist,” recommends Dr. Lio “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.”
Can’t find a TSW-aware healthcare provider near you? Some can work virtually to provide you with support and information.
One such practitioner is Dr. Olivia Hsu Friedman, mentioned previously in this article. Dr. Friedman is a doctor of acupuncture and Chinese medicine who specializes in the use of Chinese herbs for dermatology. She believes that Chinese medicine can offer some solutions for people experiencing TSW. “I want people to know that there is help in herbal medicine but also that if we want things to get better for patients with TSW, we need to do whatever we can in terms of advocacy with practitioners, the public, legislators, and insurance carriers. Joining the efforts of organizations like ITSAN, the National Eczema Association and others can only help. Get a platform and speak up.”
When asked what gives them hope for the future of TSW, people interviewed for this article responded:
“ITSAN, in partnership with the Allergy and Asthma Network, just released a comprehensive, first-of-its-kind survey gathering data around the impact of the accumulation of steroid use over time. After taking this survey, I finally felt like my crazy story was fully heard and understood on a deeper level than it ever has before. I’m looking forward to seeing just where all this new data takes the TSW community.”
– Linette Roungchun, whose most recent struggle with TSW has been going on for 3 years and has more than 2,600 followers on Instagram and other social platforms where she advocates for TSW awareness and research and helps people with TSW support one another
“What’s hopeful? This collaboration with NEA. We need to reach people who don’t know TSW exists, who don’t know they have it yet, or who don’t have it yet. If they can find us [ITSAN] sooner maybe we can prevent it altogether. Rare doesn’t mean never. It doesn’t mean nonexistent. For the people who have TSW… to get proper diagnosis and medical support, that’s in the realm of possibility.”
— Kathy Tullos, RN, President/CEO, ITSAN, former TSW sufferer and caregiver
“I think that as we get new non-steroidal options and approaches, we should, hopefully, need less and less steroids, in general, which would allow us to make this a historical condition only.”
— Dr. Peter Lio, Assistant Professor of Clinical Dermatology and Pediatrics-Dermatology, Northwestern University Feinberg School of Medicine
“I will always hold out hope that more doctors will come and speak out for this community the way Dr. Peter Lio and Dr. Koushik Lahiri have. I hope to see true education about how to prevent this from happening in patients. When it comes to new medications, I am hoping that new treatments will be effective in assuaging eczema pain while also not causing extra harm long term. Moreover, it would be incredible to see holistic remedies be taken more seriously and studied.”
–Briana Banos, who has had TSW for six years and created the documentary “Preventable: Protecting Our Largest Organ,” which has garnered more the 65,000 views in less than two years.
Learn more about TSW at ITSAN.org and by watching ‘Preventable.’ Talk to your healthcare provider about your optimal eczema treatment plan and any concerns you may have regarding TSW.