Kelly Barta is the President of ITSAN, short for International Topical Steroid Addiction Network, which has over 10,000 members. The most common symptom of TSA is red-skin syndrome RSS, which is just what it says. I know. I have it myself. My face is intermittently quite red, along with my neck, the upper part of my chest, and the inside of my elbows. It itches. But I have it easy. Those who have used topical steroids longer and more regularly than I did can be suffer disfiguring blistering and oozing, taking a severe toll on their quality of life. At this year’s East-West Integrative Medical Seminar for Immunology & Wellness at the New York Medical College, one speaker told of having to give up caring for her children for a time—fortunately her parents were available. This woman had the good fortune to be treated by Dr. Xiu-Min Li. (Full disclosure, she’s my doctor, too. I’m doing much better thank you.) ITSAN had a meeting recently at which Dr. Li spoke, although not in person. I reached out to her. –Henry Ehrlich
AAC: Thanks for taking the time for our readers, Kelly. First, how big a problem is this?
Kelly: Thank you for reaching out and allowing me an opportunity to share with your readers, Henry! We at ITSAN believe that quite a few people using topical steroids to manage their chronic skin conditions are unknowingly addicted to the medication. In 2017 the National Eczema Association reported that 10.1% of the US population have been diagnosed with eczema, translating to over 31 million Americans. Since we know that the mainstream treatment for eczema (Atopic Dermatitis) is topical steroids (TS), we can assume that most diagnosed individuals have been using topical steroids to manage their condition. TSA/RSS researchers in Japan, Dr. Kenji Sato and Dr. Mototsugu Fukaya, in their publication, “Topical Steroids Addiction in Atopic Dermatitis”, state that they believe the prevalence of TSA is between 7-12% in those who use topical steroids long-term. If we take the rough estimate of 10% of those diagnosed, it’s possible that currently over 3 million people, in the US alone, may be addicted to their medication. That figure is staggering to me. Right now, ITSAN, which has been around for six years, is serving approximately 12,000 worldwide who have become aware of their physiological addiction and are going through the process of Topical Steroid Withdrawal (TSW)/RSS. This is a severe and harrowing condition that can last from months to years before recovery takes place.
AAC: How did you get involved? Is it personal?
Kelly: Very personal! I started TSW 6½ years ago quite by accident. I was diagnosed with eczema as a child, but it didn’t bother me too much until I reached puberty, which was when I began to use TS. I used this medicine to manage my “mild” eczema for 26 years. Throughout the years, my doctors needed to increase the potency of the medications to control the rashes — which happens to be a tell-tale sign of addiction. It wasn’t until I began to develop a wide array of allergies that I began to suspect my steroid use. After research, I found that steroids do have a correlation with heightened allergic response, so I decided to begin weaning myself off of them and instead of using TS, I began using a better barrier cream on my skin.
Only two days after I stopped using my medication completely, the skin on my upper body began to burn terribly and a bone-deep itch ensued. I was up the entire night on the couch, in tremendous pain. I knew the only thing I had done differently was to stop using my medication, so I googled “steroid withdrawal” and up came ITSAN. I read through their resources and description of TSW; every symptom described resonated with what I was going through. At the time I thought I would be able to get through the withdrawal within three months – I was healthy, exercised, did juice fasts–the whole nine yards. Within a week, my face swelled up like a chipmunk and the burning was so bad I couldn’t lift my arms above my head. Three months came and went; at that point I hadn’t even peaked in my withdrawal. I became bedridden for over 1 ½ years, lost most of my hair, and developed a cataract that required a lens implant.
I was in so much pain, I had to lay still in bed, not even able to lay on my side. It felt like someone had poured boiling water over me from the top of my head to my feet. The only incentive to move was the deep itch that attacked in cycles all day and night and could last for up to an hour at a time. It really is indescribable. My skin broke into fissures that oozed a foul liquid, and the turn-over in my skin was startling to say the least; it was constantly peeling off of everywhere on my body. The only place I felt relief was in the bath. So I lived between my bed and the bath. Days and nights were the same. I couldn’t get to sleep until about 8 am and when I did sleep it was only for a bit at a time. I literally felt like Job from the bible. My husband, who owns his own business, had to take over all of my responsibilities in the home and with our two boys. When I finally began to heal, and the symptoms weren’t as severe, the grieving set in. I grieved for the time lost with my children in their formative years and for the incredible strain it put on my marriage. I grieved that a medication I was prescribed for an annoying rash nearly cost me my life. And then the questions and anger set in: How could this have happened to me? How could there have been so much oversight in my medical care? Who is responsible for this?
Initially in my withdrawal, I just wanted to get through it and on with my life. But after four years of fighting this battle, I knew I had to help change the tide on how these medications are understood and prescribed. I reached out to Joey Van Dyke, the President of ITSAN, to see how I could help and was offered a position on their Volunteer Executive Board. The following year, I came on as Executive Director and then this past April, stepped into the role of President.
AAC: Can you explain the basics of topical steroid addiction? What causes it? I am particularly interested in the notion of addiction. I don’t think what I went through ever rose to that level.
Kelly: Simply put, TSW/RSS is an iatrogenic condition, i.e. a condition caused by treatment, resulting from the overuse of topical steroids. In chronic diseases, the treated skin becomes dependent on the medication and needs higher potencies to continue to be effective prolonging and worsening the original condition. When medication is stopped, a rebound effect occurs and the skin begins to burn, turn red, and itch tremendously. This usually starts on the site of application, but travels to areas that were never treated with TS. These rashes can ultimately be confined to certain areas or can can go full body. The body cycles through flares of red, burning skin, that eventually sheds off and then the process begins again. Over time, these flares become less intense, fewer and further between, until the skin comes back to its normal state. Because there hasn’t been a lot of research conducted on the mechanisms of TSW, it still is unclear what exactly is going on and why. Most doctors can only provide comfort measures, which is sometimes adequate because in most cases time heals. For those who need to maintain quality of life, there are options of immunosuppressants such as cyclosporine or methotrexate, or the new biologic, Dupixent. There are working theories around mast cell involvement, altered immune and endocrine systems, and a genetic mutation, which makes it difficult to metabolize steroids leading to toxicity and these adverse effects.
I want to mention that the drug label inserts for topical steroids state that they should not be used from more than 2-4 weeks at a time, unless otherwise prescribed by your doctor. It is widely known, that continual use of steroids, even topical, can cause problems to the HPA axis (basically taking over the job of the adrenals), growth retardation in children, osteonecrosis, and diabetes. The problem lies in the fact that eczema is chronic and western medicine believes it is incurable. That said, topical steroids are the go-to for managing annoying symptoms and getting flares under control so that they don’t escalate into infections or an out of control immune response. Since many doctors don’t believe that TS can become systemic, they prescribe them for indefinite amounts of time without proper monitoring (taking breaks and checking cortisol levels, and so on).
Topical Steroid Addiction is not an addiction like drugs or alcohol where there’s a predictable pathway and most people are conscious that they may be overdoing it. Instead, it happens unknowingly, over time, as a result from using medications prescribed by our doctors to control our disease. It’s too easy for the patient to reach for the steroids whenever there’s a flare. For many, as previously mentioned in my own experience, the skin needs higher potencies throughout time to continue to manage symptoms. When I looked into the potency of the last TS I used, I discovered it was 1,800 times the natural cortisol level in the body.
AAC: What is the underlying immune process?
Kelly: There really isn’t enough research into TSW to know how just how extensively the immune system has been changed. It is known that steroids cause a rise in IgE levels. When used for a long time, the body becomes more reactive to antigens. Although it isn’t clearly understood why, when people go through Topical Steroid Withdrawal, their IgE levels sky-rocket into the tens of thousands. The skin begins to react to nearly everything in this state. This can take years to come back into normal range. Dr. Xiu-Min Li, from Mount Sinai, has done some research on how steroids cause the Th2 (inflammatory) cells to become dominant over Th1 (inflammation regulators). We’re very hopeful on her discoveries surrounding this and treatment with Chinese herbal medicine.
AAC: Is there a typical profile for your members when they arrive at your door? What are some of the complaints? What are some of the histories of their interaction with their doctors?
Kelly: There are typically three types; those who are really struggling with worsening (spreading and severity) eczema that doesn’t seem to be helped much by steroids, those who have taken a break from their steroids, which has resulted in typical RSS symptoms, and those who are still using steroids but their skin is no longer responding to treatment and are currently experiencing red, burning skin.
Unfortunately, a very large percentage of our members have not been believed or supported by their doctors. Many have been called steroid-phobic or negligent, are scorned and even laughed at when they bring up their concerns about what they believe steroid treatment is doing to their bodies or to their children. This attitude of dismissal from medical professionals has caused many patients to walk away from their practitioners in anger and grief, feeling victimized, alone and afraid. This is a travesty, because these people desperately need to be under medical supervision. They know that they need help, but they don’t know where to turn. Not all doctors respond this way, of course. As time goes on, this condition is becoming more known and recognized. And although, there still are not many treatments available to lessen suffering and the length of the withdrawal, there are several options. At very least, patients should be monitored for infections that can become dangerous.
AAC: I was shocked in reading some of the literature you sent me that there’s widespread reluctance to recognize the extent of the problem, including from some marquee-name dermatologists. It seems to me that a membership of 10,000 ought to be evidence that something is going on. Can you summarize the rationale of these doubters?
Kelly: A friend of mine, a clinical physician from the Bahamas, gave me some good insight on this. Medicine has always been an evolving science. New discoveries are often rejected and even ridiculed. It takes time and evidence for these ideas to become widely accepted. This has been true from discoveries like antiseptic hand-washing in the mid 19th century, to incubators for neonates, angioplasty, immunotherapy in cancer treatment, the recent findings of brain trauma injuries in sports, and countless others.
There’s an uncomfortable parallel with the opioid crisis. I met some students from Yale at the International Investigative Dermatology Conference earlier this year who were researching opioids. They said that in the 80’s and 90’s doctors were sold on the idea that pharmaceutical opioids were not addictive–this based on a single letter in a medical journal. Armed with that assurance, doctors prescribed freely and it took tens of thousands of overdose deaths to alert us to a national emergency. It sounded so much like what we are dealing with now with topical steroids. Most of the physicians I have talked with don’t believe TS are addictive or can cause systemic adverse effects.
AAC: Given the kind of skepticism expressed by many doctors about the nature of the problem, your organization must be a breath of fresh air. Is that the case? How do members express their gratitude when they join the fold?
Kelly: Finding answers and a supportive group is life-changing! To see and hear the stories of others who have had the courage to walk through the hell of this withdrawal and then come out on the other side, full of life and health, brings tremendous hope. Courage is contagious. Every time I meet someone going through this condition there are always tears. There’s nothing like being in the presence and in the arms of someone who completely understands your suffering and is there to offer encouragement.
AAC: I see that Dr. Peter Lio has emerged as a hero to your movement. Dr. Lio has been a frequent, generous contribute to our website. He is very open minded about alternatives to standard of care. Can you talk about what he has done to make a difference?
Kelly: Yes! Our community is so thankful for the voice and the work of Dr. Lio! I am so grateful to him for remaining open to hear his patients’ concerns and for the research he has conducted to bring more understanding to TSW and more viable treatment methods. As a part of a scientific task force commissioned by the National Eczema Association in 2015, he helped to conduct a review of the literature of TSW. This was a big step in the medical community realizing that this condition truly exists and is not an internet myth. Dr. Lio has also recently published a study of five TSW patients response to Dupilumab, a new biologic for atopic dermatitis. Just a couple of weeks ago he presented at our first ITSAN conference. I can’t tell you how much it means to our members to have someone like Dr. Lio, who is at the top of his field in eczema research and treatment, thoughtfully address US; to validate and support us in our healing. Dr. Xiu-Min Li presented electronically. She has had some inspiring successes with TSW and its precursor moderate-to-severe eczema as well as illuminating the underlying immunology.
AAC: Are there any other heroes out there? What are they doing to merit that status?
Kelly: There are several doctors around the world who have had the courage to stick their necks out and speak up about topical steroid abuse. One of these is Dr. Koushik Lahiri, in India. He is the VP of the International Society of Dermatology and the National Secretary General of the Indian Association of Dermatologists. Just this past year, after working with colleagues for 14 years to ban over-the-counter TS, the request was finally made by India’s Drug Technical Advisory Board and granted by the Ministry of Health. Dr. Lahiri has told us about the widespread fungal infections Indians are experiencing as a result of using over-the-counter TS for skin lightening and a cocktail of fungicide/antibiotic/steroid mix as a cure-all for any skin ailment. Because the steroids weaken the skin’s natural defense mechanisms, and because of resistance developing to fungicides, formerly simple cases of ringworm are turning into full body fungal infections that are very difficult to treat.
Another hero is Dr. Belinda Sheary, a GP in Australia, whose daughter went through topical steroid withdrawal. In March of this past year, she published a long-term study of 55 patients with TSW. Her work has helped to bring more clinical definition to the condition.
Dr’s Kenji Sato and Mototsugu Fukaya in Japan have published a variety of studies on TSA/TSW and have been so helpful in offering their insight and expertise to our organization over the past several years.
Of course, Dr. Marvin Rapaport, who helped to start ITSAN in 2012 with one of his patients, Kelly Palace, was one of the first voices in the US to speak up about RSS. He has supported many of our members by connecting with their doctors in offering advice and guidance.
AAC: Gaining recognition for a “new disease” is never easy and is just a first step. Then you need to gain a constituency in the research community, then compete for funding. Would you like to describe the road forward for you and your members?
Kelly: You are so right! We face a lot of challenges, but are determined to do whatever it takes to raise awareness and end the suffering caused by misuse of TS.
One of our priorities is to conduct a prevalence study. Because there are ethical issues involved, it would be very difficult to run a study like this just asking people to stop using their medications. My hope is that we will be able to partner with one of the pharmaceutical companies who are developing new biologics for the AD community. If we can document the outcome of the placebo arm of these studies, what happens when these individuals stop using TS, we should be able to discover prevalence. After determining prevalence we would apply for a diagnostic code with the World Health Organization.
Another goal is to start a Patient Registry in Redcap that would be available to scientists for future research. We are so excited to begin that process by currently working with a group of dermatologists in Denmark and the University of Copenhagen who are developing a TSW survey for our members that will be inputted into Redcap.
As mentioned earlier, we believe that there could be a genetic biomarker that would identify those who are unable to properly metabolize steroids and should pursue different forms of treatment for their chronic skin condition. This is another research objective we are looking into.
We have put together over 50 patient stories from around the world in compact form and plan to exhibit at as many medical conferences as we are able to in the coming years to make our presence known. These stories showcase that TSW crosses all lines; that this is happening to individuals of every race, every age, both male and female. It is so important to connect one on one with medical professionals; to tell our stories and let them take a look at the evidence in numbers. Also, pictures speak a thousand words!
We have had nearly 400 of our members report an adverse effect to the FDA and have been instructed by them, as a next step, to develop a petition. We are hoping that when this is completed TS will be reviewed and that the FDA will make changes in labeling that would include TSW as an adverse effect and put clear limits on use and monitoring requirements.
As far as ongoing support measures for our members is concerned, we want to focus more on education, providing monthly webinars and biannual conferences. We are also in the process of developing a forum on our website that will allow members to access information on topics and questions we all deal with.
In Advocacy, ITSAN has recently become a member of DCAN (Derma Care Access Network) working on supporting Step Therapy Amendments for health insurance companies on a federal level. This would help our community access the medication they and their doctor believe is best for them, without having to try and fail medications they have already used (TS!). I have also been working with Step Therapy Amendment Legislation on a state level here in Georgia and we believe this bill will be passed in the 2019 session. We are also working to continue building bridges and partnering with the National Eczema Association, The International Alliance of Dermatology Patient Organizations, and the Coalition of Skin Diseases under the American Academy of Dermatology, in getting the word out about Topical Steroid Withdrawal.
AAC: Thanks again.
Kelly: Thank YOU, Henry, for putting the spotlight on TSW!
Kelly Barta owns and operates an E-Commerce Event Supply Store in addition to working with ITSAN. She resides in Atlanta, GA with her husband Jason, and sons Jackson and Haven.