MICHELLE WU / DAILY NEXUS

Over the past few months, my skin developed a full-body rash characterized by cycles of red, burning, inflamed skin and relentless itching. I am struggling with a condition called topical steroid withdrawal (TSW), a diagnosis that has yet to be officially recognized by the National Health Service. This debilitating condition was caused by the very medications prescribed to me for relief — a result of the medical community’s failure to recognize and address the long-term risks associated with topical steroid use.

Growing up with eczema, a chronic skin disease that causes dry, itchy patches of skin, my symptoms were always mild. It never interfered with my day-to-day life, so I grew used to it, accepting it as just part of who I was. 

It wasn’t until I went to the dermatologist for the first time in my adult life that I was unknowingly prescribed the most potent steroid cream on the market. At first it worked like magic, until my skin took a turn for the worse.

Topical steroids are a popular first-line method of treatment that can be incredibly beneficial for many people with eczema. However, it is important to use them correctly and safely. Overuse can lead to negative side effects such as thinning of the skin, inflamed hair follicles and acne. In more serious cases, it can cause conditions like topical steroid withdrawal and Cushing syndrome, resulting from excess cortisol and leading to symptoms such as weight gain, high blood pressure and bone loss.

Topical steroid creams constrict blood vessels, reducing inflammation in the skin and treating skin diseases like eczema and psoriasis. Over time the body can become dependent on the creams and result in topical steroid addiction — a condition in which the skin no longer responds to the creams. In this case, dermatologists often prescribe stronger and stronger steroid creams, increasing the skin’s dependency. Researchers Marvin J. Rapaport and Mark Lebwohl theorize that discontinuing steroid treatment dilates blood vessels, causing TSW, also known as Red Skin Syndrome (RSS), a term coined by Rapaport.

The result is commonly a full-body rash characterized by intense burning, itching and erythroderma, or severely inflamed skin. Other common symptoms are oozing and weeping, flaking and shedding of the skin, insomnia and hair loss.

Many dermatologists take topical steroid medical warnings seriously and recommend a safe plan for patients to use them in the short term. But there are far too many who overprescribe topical steroids, sometimes for years, and do not provide patients with the proper warnings. In my case, I was never given any instructions on the recommended usage and trusted that it was a harmless medicine. After all, how dangerous could a topical cream be?

Little did I know that its recommended usage was for no more than two weeks. I proceeded to use it for over a year before I began hearing about TSW on social media, where many individuals suffering from the condition shared their journey online to raise awareness. 

When I first learned about TSW I was shocked that such severe side effects could occur and stopped using steroid creams immediately. With TSW being relatively rare, I hadn’t thought my usage could have affected me in the same way. Nevertheless, red inflammation began to spread all over my body — it burned in a way that I had never experienced before. When I went back to the dermatologist, they suggested more steroid creams to manage the symptoms. I knew that what I was experiencing was topical steroid withdrawal, but my concerns were dismissed and I was told that it was just a more severe case of eczema.

In my distrust, I decided not to use any more topical steroids. Looking for testimonials online, I found that many others had similar experiences: dismissal from doctors, concerns going unheard and no acknowledgement of TSW being a legitimate condition. It is a disappointing experience to realize that the people who are supposed to take care of your health are failing to address such a serious condition. The medical community should be responsible for familiarizing themselves with the adverse effects of topical steroids and how to prevent and treat them, rather than leaving so many people in the dark to suffer.

Scientists know very little about TSW, and many dermatologists don’t even believe that it exists. The lack of support and information leaves people struggling with TSW to diagnose themselves, find their own treatments, lose faith in medicine and be more vulnerable to misinformation. Like many others with TSW, I scoured Reddit and Facebook groups attempting to find something that would help. I tried everything from countless supplements to different lotions, creams, oils and all kinds of diets. What seems to work for some people will make symptoms worse for others, and everyone seems to be reaching in the dark for some sort of cure. The only reliable healer appears to be time — most people with TSW experience symptoms for months to years, a long journey that is not for the faint of heart.

No one should have to go through something so preventable. If doctors were more responsible and patients were more aware of the condition, many cases of topical steroid withdrawal could be avoided. Right now, raising awareness is one of the most important things we can do to help prevent TSW. 

Fortunately, the tide appears to be turning as more and more people are spreading awareness about the condition. Briana Banos, a TSW advocate who has been struggling with TSW since 2015, created a documentary called “Preventable: Protecting our largest organ.” It shares her story, along with others from around the globe suffering from TSW, highlighting the urgent need to find ways to help them. The organization International Topical Steroid Awareness Network (ITSAN) works to educate people about TSW and even offers resources and support for those struggling with the condition.

A study was recently published investigating the dermatopathology of TSW, or the mechanism by which the disease occurs. This research was the first of its kind to identify that TSW is medically distinct from eczema due to physiological markers and symptoms such as burning, flushing and thermodysregulation. Researchers found that TSW is associated with abnormally high levels of NAD+ oxidation due to increased expression of mitochondrial complex I as a result of exposure to steroids. NAD+ is linked to activation of transient receptor potential (TRP) receptors that regulate itch, which may be the cause of the bone-deep itchiness I am all too familiar with. It also increases signaling of the transcription factor Wnt, which activates certain genes that result in symptoms associated with TSW.

However, this study is currently waiting to be peer reviewed, meaning that it needs to be evaluated before it can be used to guide any sort of clinical practice. Despite this, the fact that new research is being conducted to study TSW is another step towards the condition being medically recognized and to finding a proper treatment. 

For people struggling with TSW or moderate to severe eczema, there are fortunately other medication options now available that are not known to cause withdrawal symptoms. Some examples are biologics, which are a class of medicines that are isolated from organic sources such as humans, animals or microorganisms. Dupixent (dupilumab) and Adbry (tralokinumab-ldrm) are becoming common treatments for eczema and TSW. 

In my journey with TSW, I initially refused to use any medications to treat my skin and wanted to heal naturally. But it proved to be very difficult to go about my daily life as normal. I was hanging on by a thread, rarely making it to class and other obligations, sleep deprived from insomnia and frequently bedridden due to painful flares. After months of this I decided it was time that I needed treatment and am now looking towards biologics as an option. 

However, it is important to keep in mind that there is no “cure” for TSW or eczema — these medications work to mask symptoms but do not treat the underlying cause of the condition. As a result, many patients who choose medication tend to be on them for life or until topical steroid withdrawal runs its course.

Like so many others, I sought treatment for a mild skin condition and now find myself battling the severe symptoms of TSW as a result of simply following my doctor’s instructions. The experience opened my eyes to the shortcomings of the medical community that have failed to be addressed. Patients deserve better care and transparency about the potential risks of treatments, with healthcare providers taking responsibility for understanding and communicating these risks. Despite the ongoing struggle, there is hope as individuals among the TSW community continue to raise awareness and advocate for change in the medical community. I am confident that topical steroid withdrawal will someday be a recognized and treatable diagnosis that, most importantly, is prevented.