Corticosteroids are the go-to treatment for dermatologists when it comes to a range of skin issues. They deliver fast and effective results, at least initially. However, there is a darker side known as Topical Steroid Withdrawal (TSW). Is TSW real? It’s a highly debated question! For those who suffer from it, its reality is undeniable, but the majority of the medical field denies the condition. However, there is a wealth of research that covers the topic, which suggests that it is not simply a self-invented ailment.
Corticosteroids dangers were already revealed 60 years ago
Topical corticosteroids were first introduced in 1951 to treat common skin disorders, such as eczema, psoriasis, rashes, etc. More than a decade later, in 1963, their potential dangers were first mentioned in an article, when a group of dermatologists noticed male patients developing atrophic striae in their groin area after using a steroid cream.
44 year old article sounds like a prophecy!
In 1979 authors Albert M Klingman (Dermatologist) and Peter J Frosch (Dermatology Professor) published a controversial article, writing about possible addiction to corticosteroids and the intoxicating pace chemists have been developing these drugs, with no cautionary rules. The professors write: “nature yields her bounties for a price – larger benefits are obtained at a cost of greater hazard. Increasing efficacy goes hand in hand with increasing toxicity.” – this sounds like a prophecy!
They warn about serious side effects, especially in children – cases where steroid usage has caused Cushing’s Syndrome, growth issues, and even death due to adrenal failure. Authors warn that “”Progress” in producing ever more potent topical drugs has reached the point of diminishing returns.”.
It’s disheartening to see that today, 44 years later, things haven’t improved much. Topical steroids still remain the primary alleviation for skin issues, and unfortunately, its usage is rising without any indication of slowing down. Most dermatologists still overlook the serious issues associated with corticosteroid usage, like Topical Steroid Addiction and Withdrawal. However, there must have been some progress in the medical field in recent years, right? Let’s explore!
Overview of research in the recent decade
Online research reveals numerous studies and articles published by health agencies, dermatologists, dermatology professors and students, that shed light on the potential serious side effects of corticosteroids.
The most well-known TSW-supportive dermatologist today is dr Marvin Rapaport. He has published several papers about corticosteroid addiction and has his own Youtube channel, where he explains everything regarding TSW.
However, there is a bit of a sister problem regarding TSW research. In an article in The British Journal of General Practice an anonymous US-based researcher commented:
“Bluntly, I fear that lack of funding for such work will be a major hurdle. Obviously, no drug company would invest in investigating complications of its products, and so it will require a government or non-government organization to be excited enough to launch something substantive.”
This perspective raises significant concerns and prompts us to question the pharmaceutical industry as a whole.
Creating awareness among dermatologists
An article published in the Indian Journal of Dermatology in 2014 was aiming to create awareness among dermatologists about the potentially harmful effects of topical steroids. It brings out different conditions that steroids might cause, such as acne, rosacea, perioral dermatitis, and eyelid dermatitis. Steroid-induced conditions are often more severe and inflammatory compared to common conditions. Authors stress the importance of considering the side effects, using appropriate potency steroids for short-term durations and not prolonging the usage when the skin condition remains resistant to treatment or when it affects sensitive areas.
Exploring awareness among steroid users
Another study explores awareness about corticosteroids among Indian people, to understand the extent of the drug’s misuse. In India topical steroids are available in various irrational combinations which cause more damage to the skin. The authors concluded that due to several factors, there is extreme topical steroid abuse among the Indian population and 51% of studied steroid users experienced some form of side effects. There’s more to know about India and corticosteroids, read here!
What’s the dermatologists perspective?
To get the dermatologists’ perspective, one recent study conducted a questionnaire among 103 UK-based dermatology consultants and registrars know their thoughts regarding TSW and assess their attitudes toward self-diagnosis. Here’s how the clinicians answered:
- 32% of the respondents considered TSW as a distinct clinical entity, while 17.5% did not share the same perspective, and 48.5% remained unsure.
- The clinicians had encountered a total of 599 patients who self-diagnosed with TSW. However, they personally diagnosed TSW in only 157 cases.
- 82% or respondents linked the diagnosis to social media and 96.1% associated TSW with eczema.
- Only 18% felt their patients with TSW were receiving adequate care.
The study shows that clinicians see this phenomenon as strongly linked to eczema and being driven by social media. Patients self-diagnosing with TSW were more likely to be viewed negatively in terms of treatment concordance and difficulty with management.
TSW Case Study of mother and son
An intriguing case report of mother and son was published in 2023, whose TSW symptoms were nearly identical. They both developed TSW after a prolonged, potent corticosteroid regimen. While the mother had a longer history with the medication, they both relied on high-potency steroid creams almost daily for the past 5 years. Due to COVID-related constraints, they ran out of medications, forcing them to abruptly stop usage. Consequently, they faced severe redness, stinging, and swelling on their skin. Seeking medical help, they visited the emergency department and were diagnosed with TSW.
After being 2 and 2,5 years steroid free, their condition has significantly improved, but still experience itchiness. Authors of the study point out that given their almost identical TSW timelines, and the fact that they improved without corticosteroid, helps support the growing evidence that TSW is its own entity, not simply a flare of the underlying dermatosis. For more information and photos, read the study here.
There are many other TSW-supportive articles and research papers found online and the key message these publications emphasize is similarly clear:
Situation, where TSW is not recognized by the medical field greatly harms patient-doctor trust. Further high-quality research and increased awareness surrounding this condition is essential among both, the medical field, and patients.
Topical Steroid Withdrawal or Steroid Phobia?
However, not all articles and research papers are affirming of TSW. Some of them have a skeptical tone, calling the whole situation “steroid phobia”.
In a 2021 article exploring Steroid Phobia, researchers aimed to provide an objective view of Topical Steroid Withdrawal by summarizing evidence from various online sources. The publication highlights the duration of TSW symptoms reported in different studies. Notably, one study revealed that out of 13 subjects, 7 continued to experience “active TSW symptoms such as shedding, oozing, erythema, pain, and itching” even after 20 months of ceasing Corticosteroids. Another survey involving 3840 participants who self-reported TSW found that 26% of those who had discontinued TCS more than 5 years ago indicated persistent symptoms. In this study, it was concluded that current evidence for TSW is insufficient, as majority of studies are low quality. However, authors believe it’s still rational to entertain the possibility of TSW, as withdrawal symptoms have been reported with other medications as well.
Steroid Phobia should be “treated”?
An article published in American Journal of Dermatology states that reasons for steroid phobia among patients include lack of education, fear of side effects, misinformation, negative experience with topical steroids, and frequently changing clinics. Authors bring out that the worldwide prevalence of topical steroid phobia ranges from 31 to 95.7% regardless of patient race/ethnicity or dermatological condition. The authors suggest that addressing these concerns can be done through educational videos, personalized consultations with dermatologists, and hands-on demonstrations of topical steroid application. They also recommend that healthcare providers proactively screen patients for steroid phobia, particularly among populations who are more vulnerable.
An aggressively dismissive article receives a public response
One of the most dismissive and negative article towards TSW is a bit of a hard reading for those going through the condition. The study focuses on online misinformation regarding topical corticosteroids by exploring related information from Google and Social Media. Authors claim with absolute certainty that topical corticosteroids are safe and emphasize that “corticophobia” is a significant obstacle to successful treatment. Topical Steroid Withdrawal is claimed to be a myth, that’s being propagated on Social Media. In fact, they deny the idea that underlying issues like leaky gut or food intolerances could be causing eczema. Using natural remedies and treatment approach known as ‘no moisture treatment’ (NMT) are also claimed to be useless or even harmful. Due to the lack of concrete evidence, they even question the well-known side effects of corticosteroids, such as skin thinning and adrenal suppression.
Interestingly, the authors believe that patients may hold onto the belief of TSW as a way to protect their sense of self by placing blame on external factors, like corticosteroids. Additionally, mixed messaging from healthcare professionals regarding the use of steroid creams creates even more challenges to families dealing with skin diseases.
Response giving the opposite perspective
In a subsequent issue of the same publication, a response was shared from a dermatology professor, a patient with TSW, and a representative from the National Eczema Society. These authors agree that the warning about the risks of misinformation in healthcare is valid. However, they disagree with disregarding uncertainties (and some certainties) surrounding true-false information. They point out that the authors of the original study had a non-neutral approach, as they specifically searched for keywords like “disinformation” and “conspiracy theory”, leading them to discover papers by authors who share similar opinions. In their response letter, the authors express disagreement with the notion that TSW is a myth. They highlight the fact that several reputable organizations, such as The UK Medicines and Healthcare products Regulatory Agency (MHRA), the British Association of Dermatologists, and the National Eczema Society, maintain an open-minded stance or acknowledge the existence of TSW.
Banned drugs in history
Throughout history, numerous drugs that were once believed to be safe have faced bans due to being dangerous. It’s intriguing to learn that substances like cocaine and morphine, now known as dangerous street drugs, were once used to alleviate toothache, and even given to children. Similarly, heroin was once utilized to treat tuberculosis and even the common cold. Methamphetamine, despite its highly addictive properties and alarming psychological effects, was once prescribed for depression.
One of the most outstanding examples is thalidomide – a drug that was mainly prescribed to pregnant women in the 1950s to alleviate morning sickness. Shockingly, a single tablet was enough to cause irreversible damage to the fetus, leading to the birth of babies with severe impairments. It took five years before the link between thalidomide and the 10,000 malformed children was finally made. Although the court case resulted in no guilty parties being found, it set a precedent that led to stricter drug testing and improved reporting of side effects. There is a fascinating documentary about the thalidomide saga available on Youtube.
Corticosteroids used for aesthetics in India
In India, there are more serious issues concerning over-the-counter (OTC) medicines. Unlike many other countries, India currently lacks clear guidelines for OTC medications. As petitions have been filed by dermatologists and other medical workers, the government is making efforts to improve the situation, but these changes will take time.
The availability of high-potency corticosteroids without prescription also poses several problems. In India, fair skin is culturally seen as having a higher social status, leading to steroid use not only for treating skin conditions but also for skin lightening. This is because these creams can inhibit melanin production, which affects skin pigmentation. It has been reported by various studies that many patients use it as a general face cream. A study confirms, that this has resulted in an epidemic of rashes that resemble side effects of corticosteroid addiction on the face. Cosmetic creams marketed as fairness creams might also actually contain steroids!
According to a 2022 article in Clinical and Experimental Dermatology, it’s suggested that in order to address the perception that lighter skin is superior, we need societal-level changes. One way we can do this is by ensuring a diverse representation of all skin tones in the media, which encourages a broader understanding and appreciation of different skin tones.
Another problem in India is ringworm, which took almost epidemic dimensions in 2021, and treating the disease with steroids, mixed with anti-fungal and antibacterial medicines. These combinations are actually very harmful, as they might lead to drug resistance and make these infections highly resilient.
Main problems regarding TSW
Basically, we are facing 2 major issues at once.
- The issue of Topical Steroid Withdrawal (TSW) itself, people suffering from it, their lifestyles are severely disturbed and there’s no effective cure for the condition.
- Skepticism by the medical community towards this condition, that further exacerbates the initial problem. This results in:
- Trust issues between patients and doctors, resulting in patients seeking help from unregulated online resources.
- The number of TSW sufferers is expected to rise since many are unaware of its existence until they personally experience it. TSW as a potential side effect is not mentioned on the steroid creams’ information leaflets, and doctors often fail to provide adequate warnings. Steroid creams often appear harmless and are commonly used for minor skin issues, leading people to use them without caution or fear. If people with eczema would be aware of the potential consequences of steroid cream usage, more people would seek help in natural remedies or try to find the root cause of their skin issues.
Awareness is on the rise
As seen, there is quite a bit of uncertainty and skepticism surrounding TSW within the dermatology community. The good news is, there is an ongoing debate among medical professionals regarding TSW’s existence and management, and fortunately, several signs reflect that the awareness is on the rise. For example from the period 2016 to 2021, there was a 274% increase in mentions of TSW across Social Media platforms. Social media, showing the personal experiences of regular people, often has the most trustworthy and influential effect.
Corticosteroids awareness created by organizations
The recent publication brings out significant developments regarding TSW acknowledgment by The National Eczema Association (NEA). The organization had received numerous reports of steroid withdrawal syndrome, so in 2015, it published a review of 34 studies including more than 1,000 people. At that time, the NEA was cautiously skeptical, stating that more research was needed to fully understand withdrawal as a side effect of topical steroid misuse. Fast forward to 2021, and we have an updated review published by the NEA. It confirms what many suspected – long-term use of corticosteroids can indeed lead to topical steroid withdrawal. The NEA emphasizes the importance of doctors educating their patients about the risks and following up with them while they are using these medicines.
In July 2022 Government of Canada also made a statement regarding TSWS in a Health Product InfoWatch article warning about misuse of corticosteroids and to raise the overall awareness.
Events to promote awareness
Another small development in the field was the 2022 stakeholder workshop focused on TSW, held by the Centre of Evidence Based Dermatology. The workshop allowed an exchange of ideas, experiences, and key concerns resulting in an ongoing dialogue between researchers, patients and organizations. Five key messages were agreed to publish for the clinical and research community and published in British Journal of Dermatology:
- High-quality research is needed.
- Clear definitions and diagnosis criteria are a priority. There is no clarity on how many people suffer from TSW and how it is being diagnosed and treated.
- Prevention of TSW is the key goal and there’s a need for better understanding of the initial conditions, that steroid creams are used for.
- Research contributes to better understanding and acceptance of TSW within the medical community.
- TSW patient involvement in research is important to ensure its meaningfulness for the patients.
United Kingdom leading the way
The UK appears to be at the forefront of TSW research and recognition. In 2021, the government published a Public Assessment Report, specifically addressing TSW and its symptoms. This has sparked more discussion and debate around the topic. UK is taking proactive measures to safeguard people’s health, using a Yellow Card Scheme. It’s a way to report and monitor any adverse reactions or side effects from medications and medical devices. This scheme plays a crucial role in identifying safety concerns, issuing warnings, and even withdrawing products if needed. Sometimes pre-approval trials can miss certain side effects or interactions, so it’s good to know that efforts like this are being made to ensure safety and protect well-being.
TSW is a question of belief?
Unfortunately, we still have a long way to go, as most dermatologists are in denial when it comes to TSW. I’ve even encountered a doctor, who equalizes “TSW believers” with bleach-drinking conspiracy theorists. It’s difficult for TSW sufferers to comprehend that their condition is being dismissed by the medical community – individuals who should ideally be compassionate, open-minded, and collaborative in seeking solutions. To those grappling with TSW, it is evident that the intense symptoms they endure A R E a direct consequence of the medication they have so graciously been prescribed. It’s not just about believing anymore, as several public organizations acclaim TSW as a real conditon and hopefully dermatology community can’t wipe it under the rug for too long.
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Image by rawpixel.com on Freepik
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