By Henry Ehrlich
In recent decades, new allergic conditions have appeared and proliferated at a pace more rapid than the capacity of doctors to classify them, let alone treat them. Eosinophilic esophagitis and mast cell activation syndrome are just a couple of examples of “new” diseases that defied classification for years and continue to elude definitive treatment. Another one that has been occupying a great deal of my time is an offshoot of moderate-to-severe atopic dermatitis (AD). Eczema is an old disease. It’s the conditions pursuant to treatment that are new. Over-reliance on the frontline medicine, topical steroids, results in topical steroid addiction (TSA), topical steroid withdrawal (TSW), and TSW’s most visible and debilitating symptom, Red Skin Syndrome, (RSS).
I have been thinking about these conditions while interviewing patients of Dr. Xiu-Min Li being treated with traditional Chinese medicine and bringing them back from the brink of despair. Red-skin syndrome is debilitating, disfiguring, and demoralizing. They describe pants stuck to their legs with blood; buying a dust-buster to remove dead skin from their beds in the morning; opiate dependency from trying to cope with the pain. One mother says she has no memories of her child’s first two years except his blood and pain, while another had to turn care of her child over to grandparents for a period of time. Once you go red, you’d rather be dead.
A thread that ran through their stories was frustration at doctors’ low receptivity to the conditions that were plainly on display and their continual resort to prescribing stronger steroids. It’s not only the doctors’ fault. Patients are so hungry for relief that they go overboard in their use of steroids. In 2014 we featured an account of a talk by James Treat, MD of the Perelman School of Medicine at the University of Pennsylvania. We wrote in summary of Dr. Treat’s talk: “While many of us are steroid averse, sometimes to a fault, eczema brings out the opposite tendency. To wit, if it works people will continue to use the medicine too long. There’s a hierarchy of steroids and while it may be advisable to use a very strong one to gain control, the treating physician should closely monitor progress, and the dosages should be stepped down. Dr. Treat said this is a particular problem for teenage girls who want to avoid having their health supervised and will use what works to keep their skin clear until their immune systems are dangerously compromised.
I can certainly sympathize with those adolescent girls; I have resorted to that behavior and incurred RSS myself, albeit of a very mild variety. As anyone with chronic eczema can tell you: anything to stop the itch.
A New Era of Understanding and Treatment?
A few years ago at a conference a prominent academic dermatologist opined that AD had lagged behind psoriasis in attracting pharmaceutical money (you can see the results every day on TV) but that was going to change. The biologic dupilumab (Dupixent) has since hit the market.
In the meantime, there remain the challenges of preventing and managing a major epidemic. Another speaker at that meeting was Dr. Peter Lio, frequent contributor to this website, who, along with Neha Chandan, MPH and a fourth-year medical student, has published a review article in the August issue of Practical Dermatology that should help doctors understand TSW and RSS more fully, and guide them in preventive and therapeutic treatment. They write, “Topical Steroid Withdrawal (TSW) is a poorly understood clinical adverse effect of inappropriate, prolonged, or frequent use of TCS (topical corticosteroids), generally those of mid- to high-potency. The mechanism behind this phenomenon remains unclear. A fine balance exists between using TCS effectively and avoiding adverse side effects of these agents, including topical steroid addiction (TSA) and TSW. Because TSA tends to precede withdrawal, prevention through proper treatment of AD is key. When TSW is suspected, rather than continuing to escalate treatment with steroids, one may consider the use of other therapeutic options.”
Not a moment too soon. A few months ago, we published an interview with Kelly Barta, CEO of ITSAN (International Topical Steroid Addiction Network) which has 12,000 members worldwide. The interview contained an estimate that 3-million patients in the US alone may have TSW.
Our friend Tonya Winders, President & CEO of Allergy & Asthma Network, tells us they have been working on a number of AD initiatives, including shared decision making for patients and doctors, in collaboration with the American College of Allergy, Asthma, and Immunology, and developing a nursing AD educator role. Her organization has also published a model publication called Understanding Atopic Dermatitis: Knowing Your Skin from the Inside Out, which gives you everything you need to know about causes, management, and treatment. For more on AAN, click here.
Listening to Patients
The study of eczema from the patient point of view is about to take a major leap forward on September 23 at a meeting in Washington, DC, and online billed as “The First Patient-Focused Drug Development Meeting Dedicated to Eczema. Called “More Than Skin Deep: Understanding the Lived Experience of Eczema Patients.” They will tell their stories to an audience of FDA staff, drug and medical device developers, and of course other patients. This format is particularly pertinent in light of the running theme from my interviews that doctors don’t seem all that open to the full history, nor to explore beyond the standard tools—steroids and more steroids.
This theme rang a bell. Dr. Renata Engler, a distinguished allergist who spent most of her monumental career in the US Army, told me for a book I wrote about Dr. Li, “The system is currently failing a lot of patients. There’s a tendency to abandon those who don’t fit into comfortable evidence-based slots…Our community consigns patients to hopelessness or treatments that are worse than the disease. Steroids haven’t answered the mail for everyone.”
Dr. Engler also said: “We have lost connection with patient stories. Patients who don’t fit are marginalized. Doctors should expand their medical toolbox for patients who don’t fall within guidelines.”