Why Patients Have Turned to Social Media and What to do Next
Topical Steroid Withdrawal Syndrome, known for its acronym (and hashtag) TSWS, is becoming a hot topic on social media as new cases continue to emerge amidst a lack of proper guidance from healthcare practitioners.
The rise of TSWS discussion in online communities is likely due to the lack of official recognition in medical settings. There are no such things as standardized diagnostic criteria or insurance billing codes for instance. People are not receiving the care they need, so they are turning to alternative sources to find resources, self-treat, and share their stories.
While the growth in community support is crucial, especially considering the mental health toll of skin diseases, there is a risk to patients who seek out and experiment with treatments that haven’t been demonstrated to be safe or even necessarily effective.
Topical Steroid Withdrawal Syndrome Treatments
Treatments take time and are often costly so it’s important that there is access to methods that will actually work, with close monitoring from qualified practitioners. While the United States has not put significant resources into researching Topical Steroid Withdrawal Syndrome, more studies have begun to emerge and some regulatory bodies in other countries have issued statements to their clinicians to take this issue seriously.
Topical Steroids/Corticosteroids (TS) are widely prescribed for many different skin disorders, especially types of eczema, which is extremely common in both adults and children. In 2022, 13.8 million Corticosteroid prescriptions were filled in just the United States.
Amongst those who have eczema and are prescribed Topical Steroids, it is estimated that 12% will develop Topical Steroid Withdrawal Syndrome, and this is likely a major underestimation due to the lack of diagnoses being made. Kids are at the most risk of adverse reactions as their skin barrier is still immature and more prone to side effects from topical treatment.
The issue is particularly tricky because Topical Steroids have adverse side effects themselves, the original skin disease being treated (such as eczema) has its own set of symptoms, and TSWS is yet a third potential manifestation.
It can be difficult to recognize Topical Steroid Withdrawal Syndrome as a separate syndrome occurring and to differentiate it from TS side effects or a flare up of the underlying condition. This can lead to a misdiagnosis and a subsequent lack of treatment, or worse, a continuation of the Topical Steroid treatment that created the problem in the first place.
Having a skin disease such as eczema, often atopic dermatitis, already implies that there is a disharmony in the skin barrier function. This is often connected to other systems of the body that involve the gut microbiome, allergic and autoimmune systems, and neurotransmitters. This means that it is not only the skin that is affected in each patient but also other systems in their body. Additionally, patients are sharing that having TSWS greatly affects their mental health, activities of daily living, jobs, and even relationships.
While eczema can be successfully addressed if it is approached in the right fashion, Topical Steroids can create a worsening of the condition and possibly lead to the much more difficult situation of TSWS, which can persist for years and cover more of the body than the initial disease.
This article will break down the differences between the commonly diagnosed Eczema, Topical Steroid side effects, and Topical Steroid Withdrawal Syndrome. It will also discuss the most important things for eczema patients and clinicians to consider when deciding on treatment plans including avoiding the use of TS altogether, and what to do if you’ve already been taking TS or have developed TSWS as a result.
What are topical steroids used for?
Why are they first line treatments for skin diseases like eczema/dermatitis?
Both adults and children with skin diseases like eczema are usually prescribed potent topical steroids, which are used on several body parts at once, covering a significant portion of the total skin, for a long period of time. Topical steroids are usually prescribed for their immunosuppressive, anti-inflammatory, and antiproliferative effects.
The steroids are used to prevent the release of inflammatory chemicals that disrupt the skin barrier and lead to skin changes. This means they can potentially be quite effective for fast-acting, temporary symptom reduction while they are in use. They are commonly used for eczema and also many other skin diseases. The most common topical steroids prescribed for skin diseases are Beclometason, Betamethasone, Clobetasol, Hydrocortisone, Mometasone.
What are the common symptoms of eczema and skin diseases that steroids are used for?
In order to highlight the issue of diagnosing Topical Steroid Withdrawal Syndrome, it’s important to consider the symptoms of skin diseases that are treated with steroids as well as symptoms of using and of discontinuing steroid use. This helps to show how similar some of the symptoms can be and why there is often misdiagnosis. On the flip side, this comparison shows that there is a way to differentiate between the different causes of symptoms if close monitoring is provided by the clinician and patient.
As eczema is one of the most common skin diseases, and is commonly treated with topical steroids, the symptoms are important to be able to differentiate. The main symptoms of eczema include: dry, rough, and scaly skin, intense itching, inflamed or red patches, raised bumps, and if severe: crusted, cracking, oozing, swollen or thickened skin. Atopic Dermatitis is the most common form of eczema and is known for its itchy red patches.
The main areas for atopic dermatitis are in the elbows and knee pits, hands and fingers, and the face and neck. Children also often get it on their arms and legs, but it can occur anywhere on the body.
What are the side effects of the steroids themselves?
Topical steroids were first celebrated for being able to bypass some of the ill effects associated with oral steroids. Unfortunately it turned out that topical steroids are absorbed extremely well due to their small molecular weight and so their side effects are not limited to the skin. The qualities that can make topical steroids temporarily effective for skin conditions like eczema, are also what can impair the skin barrier over time.
Adverse side effects of topical steroids may include:
Skin barrier damage, ulceration, purpura (spots/patches under skin), telangiectasia (visible vessels/spider veins), stretch marks, pigmentation changes, stellate pseudoscars (white lesions common during ageing) easy bruising, pigmentation changes, acne, perioral dermatitis, increased skin infections, skin atrophy and prolonged wound healing.
Of further concern are the effects on the eyes, such as:
Cataracts and photosensitization, ocular hypertension, vision loss, and glaucoma.
And other non-local side effects such as:
Endocrine disruptions including changes to menstruation and lactation, hirsutism, flushing of the face, increased infection risk, adrenal insufficiency and Cushing’s syndrome or similar features (buffalo hump, moon face, weight gain), decreased bone density, and diabetes.
Unfortunately, patients often do not stop using topical steroids due to a resolution of their skin condition but rather due to a lack of response to treatment, or even a worsening of their symptoms. As the skin and genitalia are the most sensitive areas, those treating these parts of the body also tend to notice more symptoms develop than those who treat mainly the trunk and limbs.
It is important to note that the Topical Steroid side effects listed here are simply from using the prescribed medication. This isn’t yet a development of a withdrawal syndrome. These symptoms occur at the same time as the use of the Topical Steroids and usually appear after they have been in use for a while. Some patients have reduced symptoms of their original disease, such as eczema, only to experience side effects such as these. In an even worse scenario, patients may have both simultaneously!
It is easy to see why the use of topical steroids is something to be wary of and why they should be used with caution. Naturally, many patients discontinue treatment in hopes of improving their circumstances, or to at least return to the initial disease state. Unfortunately, this can be when Topical Steroid Withdrawal Syndrome rears its head.
What are the symptoms of Topical Steroid Withdrawal Syndrome and how does it develop?
Why is it happening in the first place?
Topical Steroid Withdrawal Syndrome is sometimes referred to as Topical Steroid Addiction, or as red skin syndrome. The main thing to note in order to differentiate it from TS side effects is that its onset is after discontinuation of Topical Steroids and there tends to be a noticeable change from intense itching to a burning or stinging sensation as well as a bright red rash. The rash in TSWS tends to spread beyond where the Topical Steroid medication was applied and lead to peeling and flaking of the skin.
While these differentiating factors are notable, they are similar enough to Topical Steroid side effects and various skin diseases that it’s easy to see how it may not be recognized as a withdrawal syndrome. There are currently no set of diagnostic criteria that are taught to clinicians for TSWS, which also means there are no billing codes for them to apply for insurance coverage. Additionally, many healthcare providers may be either skeptical of the existence of TSWS, or poorly trained on how to help patients avoid and treat it.
One of the main issues with Topical Steroids is not simply the potential for side effects, or their addictive nature, but also the improper oversight from prescribers. For decades, TS prescriptions have referred to the ‘fingertip’ method for application, which is very unspecific and may be easily over or under-dosed by the patient. There is almost no way for practitioners to know how much patients are really using. It also seems that patients are not given much indication on how often they should be applying Topical Steroids, to how much of the skin, and for how long. Many patients use Topical Steroid creams for many years without follow-up from their practitioner.
It has been postulated that the potency of the Topical Steroids is also of critical importance, however there are some more recent reports and studies that suggest even the lower potency Topical steroids, even for short duration, may still pose a risk in developing Topical Steroid Withdrawal Syndrome.
While certain regulatory bodies in Canada and the UK are urging practitioners to be aware of TSWS and seek to use lower potencies and durations of TS prescriptions, with periodic breaks for longer-term treatments, and tapering at end of treatment, this may not be enough to prevent the issue and it still doesn’t rectify the lack of clinical standards.
What do we need to know about treating skin diseases to avoid Topical Steroid Withdrawal Syndrome?
With all of the available data at this time, it seems that, if possible, avoiding the use of Topical Steroids should be a goal for dermatologists and other clinicians writing prescriptions for skin diseases like eczema. Of course, that means there needs to be alternative treatment options available.
There are currently steroid-sparing treatments being further developed but even they tend to cause local area sensitivities and are not yet affordable or widely available. They also aren’t deemed appropriate for children at this stage.
It is important that patients seeking help for skin diseases are aware of the risks of Topical Steroids so they can find a practitioner who is knowledgeable on the topic and able to offer alternatives.
Other methods of treatment should be used whenever possible, starting with the most gentle methods, such as appropriate moisturization, or changes to the diet and environment.
A withdrawal syndrome implies that there is first an addiction.
If the body becomes dependent on a substance to keep symptoms at bay, then it is plausible that, at the very least, symptoms of the original skin disease will return when discontinued. However, due to the nature of Topical Steroids and how they can alter the skin barrier, new ailments may arise during treatment, or a reaction to stopping the medication may occur as the body may have adapted to relying on it.
It is no wonder that patients are seeking help through online communities and social media.
If their primary practitioners and specialists are not offering proper guidance, or are even skeptical about the issue of Topical Steroid Withdrawal Syndrome altogether, then many patients will understandably look for content elsewhere and may even pay money for products being shared online that others claim have provided relief.
Patients who have suffered for a long time without help from their doctors may also be easily exploitable as they are desperate for a solution. It is difficult to know if information being circulated online is reliable and if products and methods are effective, or more importantly, harmful.
Ideally, doctors and clinicians will become more versed in preventing and addressing Topical Steroid Withdrawal Syndrome and at least offer proper guidance to using Topical Steroids if alternative treatments are not something they can prescribe. Patients are likely to seek help elsewhere where Topical Steroids are not used at all and in that case, a licensed practitioner is best!
If someone is struggling with an ongoing skin disease, such as eczema, and they are either trying to avoid using Topical Steroids, or are worried about developing Topical Steroid Withdrawal Syndrome while coming off of them, it’s important to work with a practitioner who can address the root cause as well as the current symptoms.
A combination of Traditional Chinese Medicine (TCM) and Functional medicine can be a uniquely suited approach to Topical Steroid Withdrawal Syndrome and skin diseases in general.
This combination of therapies works by using functional testing (think gut tests, blood, tests etc.) as well as TCM diagnostic measures and herbal medicine (both topical and internal) to either prevent the use of Topical Steroids completely, or to help safely come off of them. In the case of infants and children, it is of even greater importance to protect or heal their skin barrier and prevent them from developing potentially life long issues as a result of improper treatment.
If you or your child is facing ongoing symptoms of eczema and other skin diseases, or has been prescribed topical steroids, get in touch to address the issue at its root. Work with a practitioner who takes Topical Steroid Withdrawal Syndrome seriously and is equipped to guide you towards healing beyond your initial disease.
Dr. Jenny Bisset
Founder of The Bisset Method
JB Wellness
Chinese + Functional Medicine
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