Topical Steroid Withdrawal – Everything We Know So Far

Topical corticosteroids (TCS) and hydrocortisone creams have been a mainstay in atopic dermatitis treatment for many years due to their effectiveness, affordability, and lack of equally effective alternatives. They work by reducing inflammation and are widely recommended for various types of skin illnesses such as eczema and psoriasis.

While most people with atopic dermatitis use topical steroids without adverse effects, a condition known as “topical steroid withdrawal” (TSW) can occur when individuals stop using these steroids. TSW is characterised by symptoms like redness, itching, and skin discomfort.

What is Topical Steroid Addiction?

Topical Steroid Addiction (TSA), also known as Topical Steroid Withdrawal (TSW) or Red Skin Syndrome, is a condition characterized by adverse effects resulting from the prolonged and indiscriminate use of topical corticosteroids.

Over time, patients may find that they require stronger and more frequent applications of these steroids to achieve the same therapeutic effect. This cycle of increasing dependency is often referred to as “steroid addiction syndrome.”

It primarily affects the skin and can lead to a worsening of the original skin condition, along with a range of distressing symptoms, such as redness, burning, itching, and skin thinning. While TSA has gained recognition among patients and some medical professionals, it remains a subject of ongoing debate and research in the medical community.

Numerous studies and case reports have documented the clinical manifestations of TSA, with common symptoms including erythema, edema, burning sensation, and pruritus.

One notable study by Fukaya et al. (2014) examined the clinical and histological characteristics of patients with TSA, providing valuable insights into the pathology and manifestations of this condition. The study found that TSA often presents with features such as skin atrophy, telangiectasia, and signs of chronic inflammation.

The pathophysiology of TSA is still not fully understood, but research suggests that it may involve the downregulation of skin barrier function, changes in skin microbiota, and alterations in local immune responses.

Furthermore, there is ongoing debate regarding the classification and diagnostic criteria for TSA, making it essential for clinicians to exercise caution when prescribing topical corticosteroids and to consider alternative treatment options when appropriate. While TSA is a recognized phenomenon, further research is needed to better understand its mechanisms and develop effective management strategies.

What is Topical Steroid Withdrawal?

Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome, is a dermatological condition associated with the cessation of topical corticosteroid (TCS) use after prolonged and sometimes inappropriate application.

TSW is characterized by a severe rebound phenomenon, wherein the skin undergoes a period of intense inflammation and distressing symptoms following TCS discontinuation. This condition has garnered increased attention and recognition among both patients and medical practitioners.

Studies have shed light on the clinical presentation of TSW. One notable study by Hajar Tadros et al. (2019) reported that patients experiencing TSW often exhibit erythema, burning, pruritus, and skin shedding, with severe psychological distress. These symptoms can significantly impact patients’ quality of life.

Furthermore, studies, such as that conducted by Fukaya et al. (2014), have examined the histological changes associated with TSW, revealing features such as epidermal thinning and telangiectasia. The pathophysiology of TSW is not yet fully elucidated but is believed to involve the hypothalamic-pituitary-adrenal axis suppression, skin barrier dysfunction, and altered immune responses.

Topical Steroid Withdrawal is a recognized dermatological condition characterized by a rebound exacerbation of skin symptoms upon discontinuation of topical corticosteroids.

Scientific studies have provided valuable insights into its clinical manifestations and potential underlying mechanisms, emphasizing the importance of cautious TCS use and the need for further research to better understand and manage this challenging condition.

Other Names for Topical Steroid Withdrawal

Topical steroid withdrawal (TSW) is also known by several other names, reflecting the various ways people describe this condition:

• Red Skin Syndrome
• Steroid Withdrawal Syndrome
• Topical Steroid Addiction
• Topical Corticosteroid Addiction
• Topical Steroid Rebound

Epidemiology and Aetiology

Topical steroid withdrawal is considered rare and is mainly associated with specific factors such as the use of high-potency topical steroids, application to sensitive areas, and prolonged use. It appeared more commonly in adults, particularly women.

Epidemiology

The prevalence of Topical Steroid Addiction (TSA) lacks precise statistics, but a Japanese survey from 2000 indicates that about 12% of adult patients were addicted, while 7% had uncontrolled eczema due to factors other than addiction.

However, precise prevalence or incidence data were lacking due to underreporting and variability in symptoms. Regional differences also played a role.

Aetiology

Several theories have been proposed, including tachyphylaxis (reduced drug effectiveness over time), skin barrier disruption, and hormonal changes due to prolonged steroid use. Individual factors and stress may also play a role.

What’s behind the phenomenon of topical corticosteroid withdrawal? Several mechanisms potentially explain its development:

Research has revealed that keratinocytes in human skin also create cortisol, which was previously thought to solely be produced by the adrenal glands. A patient who is resistant to a topical steroid has a low ratio of GR-α to GR-β; prolonged topical steroid (TS) administration alters the glucocorticoid receptor (GR) expression pattern on the surface of cells. Additionally, the release of endothelial nitric oxide (NO) from storage and the consequent dilatation of dermal arteries cause the erythema that is a hallmark of “red skin syndrome“.

Risk Factors of Topical Steroid Withdrawal

The following are important risk factors for topical steroid withdrawal:

• Adults who are over 18
• Atopy history
• Face usage of topical corticosteroids
• Predominanace in female
• Medium or moderate topical corticosteroids
• Treatment with topical corticosteroids for six months or longer
• Usage of oral corticosteroids

Types of Topical Steroid Withdrawal

Topical Steroid Withdrawal (TSW), also referred to as Red Skin Syndrome, encompasses a spectrum of clinical presentations. These variations in TSW manifest with distinct features and may affect patients differently.

Topical Steroid Withdrawal encompasses various clinical types, including the erythematoedematous, papulopustular, and chilblains-like variants, each characterized by distinct clinical features. These subtypes have been elucidated through scientific studies, aiding in the recognition and differentiation of TSW presentations in clinical practice.

Erythematoedematous

One of the well-documented types of TSW is the erythematoedematous variant, characterized by marked erythema and edema, often accompanied by intense pruritus and burning sensations. A study outlined the clinical characteristics of this variant, emphasizing the prominence of erythema and edema as distinguishing features.

Papulopustular

Another notable type of TSW is the papulopustular variant, in which patients exhibit erythema, papules, and pustules on the affected skin areas. This variant has been described in a study, which highlighted the importance of recognizing these specific lesions to distinguish this subtype of TSW.

Signs and Symptoms

Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome, is characterized by a range of distressing dermatological and systemic symptoms. These signs and symptoms can vary in intensity and duration from person to person but often include:

• Redness (Erythema): Persistent redness and flushing of the affected skin are common and prominent features of TSW. The skin may appear significantly redder than usual and can be sensitive to touch.
• Burning Sensation: Patients often report a burning or stinging sensation in the affected areas. This burning can be intense and contribute to significant discomfort.
• Itching (Pruritus): Pruritus, or severe itching, is a hallmark symptom of TSW. It can be so intense that it disrupts daily life and sleep patterns, leading to psychological distress.
• Skin Dryness: The skin may become extremely dry and flaky during TSW, leading to scaling and peeling.
• Skin Thinning (Atrophy): Prolonged use of topical corticosteroids can lead to skin thinning. During TSW, the skin may become fragile and easily damaged.
• Swelling (Edema): Edema, or swelling, is a common symptom, particularly in the early stages of TSW. It can affect the face and other body areas.
• Papules and Pustules: Some individuals may develop papules (small, raised bumps) or pustules (pus-filled bumps) on the affected skin, particularly in the papulopustular variant of TSW.
• Skin Shedding: The skin may shed or peel as part of the healing process, leading to flaking and the appearance of raw skin underneath.
• Excessive Dryness and Cracking: The affected skin can become excessively dry and may crack or fissure, making it vulnerable to infection.
• Psychological Distress: TSW can cause significant emotional distress due to the severity of symptoms, which can lead to anxiety and depression in some individuals.

The severity and duration of these symptoms can vary widely and may depend on factors such as the potency and duration of prior topical corticosteroid use.

Stages of Topical Steroid Withdrawal

The stages of Topical Steroid Withdrawal (TSW) can be categorized into distinct phases, aligning with the progression of symptoms and skin changes.

Inflammation Stage

• This initial stage is characterized by intense inflammation of the skin. The skin becomes red, swollen, and highly irritated.
• Individuals experience significant itching, burning, and discomfort during this stage.
• The inflammatory response is the body’s reaction to the withdrawal of topical corticosteroids and the reactivation of the immune system in the skin.

Exudation (Oozing and Crusting) Stage

• As inflammation continues, some individuals may experience exudation, which involves oozing, weeping, or crusting of the affected skin.
• Oozing and crusting are signs of ongoing inflammation and the skin’s attempt to repair itself.
• This stage can be particularly distressing due to the presence of exudate and the risk of infection.

Proliferation Stage

• During the proliferation stage, the skin begins to undergo changes as it attempts to heal itself.
• New skin cells are produced, and the skin may become thickened and scaly.
• The skin can be sensitive during this phase, and individuals may continue to experience itching and discomfort.

Remodelling Stage:

• The remodelling stage marks the gradual resolution of TSW symptoms and skin healing.
• The skin’s texture and appearance start to improve, and the redness and inflammation decrease significantly.
• While some residual dryness and sensitivity may persist, individuals generally start to feel more comfortable during this stage.

The duration and severity of each stage can vary widely, depending on factors such as the duration of prior topical corticosteroid use, the potency of the steroids, and individual differences in skin response.

Sites of Topical Steroid Withdrawal

Addiction to topical corticosteroids (TCS) can affect various parts of the body, including uncommon areas like the face, armpits, or genitals. Addiction may be more noticeable in these places due to factors like rosacea on the front, or the thin skin in the armpits and genital areas. In some cases, addiction may develop in less visible areas and go unnoticed until TCS use is stopped.

The rebound eruption caused by addiction can extend to skin areas where no original condition existed, and where TCS were never applied before. The exact reason for this phenomenon is unknown, but the palms and soles are rarely affected.

However, they can also be initially affected, as seen in conditions like hand eczema. Thin skin is a factor contributing to addiction, and patients with senile xerosis can develop addiction throughout their entire body after using potent TCS.

Prevention

Prevention of Topical Steroid Withdrawal (TSW) primarily involves responsible and informed use of topical corticosteroids (TCS), as TSW typically arises from the misuse or overuse of these medications. According to health guidelines, here are some key strategies to prevent TSW:

• Consult a Healthcare Professional:
  Before using topical corticosteroids, consult with a qualified healthcare provider, preferably a dermatologist, who can accurately diagnose your skin condition and recommend appropriate treatment options. They will consider the type, potency, and duration of TCS needed for your specific condition.
• Potency Consideration:
  Topical corticosteroids come in various potencies. Stronger TCS are typically reserved for severe skin conditions, while milder formulations are used for less severe conditions. Health professionals suggest to use the lowest effective potency for your specific condition to reduce the risk of side effects.
• Intermittent Use:
  Whenever possible, health professionals suggest use TCS on an intermittent basis rather than continuously. This approach, known as “pulse therapy,” involves using TCS for a short period and then taking a break to assess the skin’s condition.
• Avoid Prolonged Use on Sensitive Areas:
  Health professionals suggest to limit the use of TCS on sensitive areas of the body, such as the face, groin, and armpits, as these areas are more prone to side effects. Be especially cautious when using high-potency TCS in these regions.
• Monitor Skin Changes:
  Pay close attention to any changes in your skin’s condition while using TCS. If you notice worsening symptoms or experience adverse effects, contact your healthcare provider promptly. Early intervention can prevent the escalation of skin issues.
• Gradual Withdrawal:
  When you and your healthcare provider decide to discontinue TCS, consider a gradual tapering approach rather than abrupt cessation. Health professionals suggest suggest this can help minimize the risk of rebound symptoms.
• Alternative Treatments:
  Explore alternative treatments for your skin condition. In some cases, non-steroidal options, such as emollients, calcineurin inhibitors, or phototherapy, may be suitable and carry a lower risk of TSW.

The prevention of TSW revolves around responsible topical corticosteroid use, following medical guidance, and staying vigilant about your skin’s response to treatment. Open communication with healthcare providers is key to managing skin conditions effectively while minimizing the risk of TSW.

The International Topical Steroid Addiction Network is a charity based in the United States who are advocating for the awareness of TSW and proper labelling of warning signs on topical steroid medication. Visit: https://www.itsan.org/

Complications

Complications associated with Topical Steroid Withdrawal (TSW) can be diverse and may include:

• Secondary Infections: The inflamed and compromised skin during TSW can be more susceptible to bacterial, fungal, or viral infections. Scratching or open wounds can introduce pathogens, leading to localized or widespread skin infections that require medical treatment.
• Scarring and Skin Changes: Long-term inflammation and damage to the skin during TSW may result in scarring and permanent changes in skin texture and appearance. This can have lasting cosmetic implications and affect an individual’s self-esteem.
• Post-Inflammatory Hyperpigmentation (PIH): As the skin heals, some individuals may develop areas of increased pigmentation (hyperpigmentation) at the sites of previous inflammation. These dark spots can persist even after TSW has resolved.
• Relapse: In some cases, TSW symptoms may recur even after an initial period of improvement, necessitating another round of TSW management. This recurrence can be frustrating and emotionally challenging.

Diagnosis

There is no widely agreed-upon set of diagnostic criteria for topical corticosteroid withdrawal. However, recent literature has identified key features that include:

• Frequent and prolonged use of topical steroids on the affected area.
• Frequent and prolonged use of topical steroids on sensitive areas like the face or genitals.
• Symptoms such as burning, itching, and rapid development of redness (erythema) within days to weeks after discontinuing topical steroids.
• Commonly associated factors like a history of atopy, especially atopic dermatitis, prior use of oral prednisone for skin issues, skin sensitivity, excessive skin shedding, oozing skin, swelling (especially around the eyes or ankles), and specific skin changes like “elephant wrinkles” on the elbows and knees (extensors) or the “red sleeve sign.”

One challenge in diagnosis is distinguishing whether the observed skin reaction results from stopping topical corticosteroids or a worsening of the underlying skin condition for which the steroids were initially prescribed.

Patch testing can help rule out contact dermatitis caused by the topical corticosteroid itself or other ingredients in the cream, although it may be challenging if there is insufficient unaffected skin.

Histological examination is not typically useful for diagnosing topical corticosteroid withdrawal due to the nonspecific histological features, including epidermal atrophy, spongiosis, and parakeratosis.

Topical Steroid Withdrawal Treatment

Numerous treatments are available, but they may not fast-track recovery.

General Approaches for Symptomatic Management

• Emollients and moisturisers
• Cool compresses, ice, and gabapentin for burning sensation
• Antihistamines to alleviate itching
• Over-the-counter pain relievers
• Psychological support

Specific strategies

• Mainstay: discontinuing topical corticosteroids (monitor for rebound reactions)
• Tapering: Gradual reduction of oral corticosteroid doses
• Dupilumab for atopic dermatitis (comes with its own side effects)
• Calcineurin inhibitors and tetracycline antibiotics for papulopustular subtype (comes with its own side effects)
• Prevention and treatment of secondary infections
• Phototherapy
• Immunosuppressants (comes with its own side effects)
• Traditional Chinese Medicine (TCM)

• These treatments offer various options, but none are guaranteed to speed up recovery. Careful management and monitoring are essential, particularly when discontinuing topical corticosteroids to watch for potential rebound reactions.

Emerging Unique Treatment Measures

No Moisture Treatment (NMT)

No Moisture Treatment (NMT) is a protocol created Dr Kenji Sato, used to accelerate healing from the side effects of topical steroids.

NMT involves severely limiting water intake, including drinking water, fruit, and moisturisers, to radically dry out the skin to encourage healing without the use of steroids. However, undergoing NMT under the care of a medical professional who provides comprehensive support and controlled conditions, differs from attempting it independently.

NMT can be an extremely challenging process, involving intense effects like skin cracking, bleeding lips, flaking skin, and heightened burning or itching. It’s also essential to recognize that people have successfully gone through TSW while continuing to use moisturisers. There are multiple paths to the same destination, and everyone’s journey through TSW is unique, reflecting their skin type, history with topical steroids, and personal preferences.

Tapering

Tapering steroids refers to a gradual reduction in the dosage of steroid medications over a specific period. The tapering process is typically guided by a healthcare provider, such as a physician or specialist, who considers factors like the type of steroid, the duration of treatment, the underlying condition, and the patient’s response to the medication.

The tapering schedule will involve reducing the steroid dosage incrementally over a specified timeframe until the medication can be safely discontinued. Tapering is a crucial aspect of steroid therapy, and it serves several purposes in topical steroid withdrawal treatment:

• Minimize Withdrawal Symptoms

When individuals have been taking steroids for an extended period, abruptly stopping the medication can lead to withdrawal symptoms, including fatigue, muscle weakness, joint pain, and a potential flare-up of the underlying condition. Tapering helps reduce the risk of these withdrawal effects.

• Avoid Adrenal Suppression

Prolonged steroid use can suppress the body’s natural production of corticosteroids by the adrenal glands. Tapering allows the adrenal glands to gradually resume their normal function, preventing adrenal insufficiency.

• Maintain Therapeutic Effect

Tapering ensures that the medication’s therapeutic effect is maintained while gradually reducing the dosage. This helps manage the medical condition effectively and prevents exacerbation.

Cold Compresses

Using cold compresses during topical steroid withdrawal (TSW) can be a helpful way to alleviate some of the discomfort and symptoms associated with TSW. Cold compresses, typically made by soaking a clean cloth or gauze in cold water or wrapping it around an ice pack, can serve several purposes during this challenging period:

• Relieving Itching and Burning Sensations: Cold compresses can provide relief from the intense itching and burning sensations often experienced during TSW. The cold temperature can temporarily numb the skin, reducing the perception of itchiness and discomfort.
• Reducing Inflammation: In TSW, the skin can become red, swollen, and inflamed. Cold compresses can help diminish inflammation by constricting blood vessels and decreasing blood flow to the affected area.
• Minimizing Swelling (Edema): Swelling, or edema, is a common symptom during TSW. Applying cold compresses can help reduce swelling by constricting blood vessels and preventing excessive fluid accumulation in the skin.
• Providing Comfort: TSW can be physically and emotionally distressing. Cold compresses offer a comforting sensation and may alleviate some of the discomfort associated with the condition.

To use cold compresses during TSW:

• Ensure that the compress is clean to prevent any risk of infection.
• Prepare the cold compress by soaking a clean cloth or gauze in cold water or wrapping an ice pack in a thin cloth.
• Gently apply the cold compress to the affected area of the skin.
• Keep the compress in place for a few minutes or until you experience relief. Avoid applying excessive pressure, as the skin may be sensitive.
• Use cold compresses as needed for comfort, but be cautious not to apply them excessively, as prolonged exposure to cold temperatures can have adverse effects on the skin.

It’s essential to understand that while cold compresses can offer temporary relief, they are not a substitute for a comprehensive treatment plan for TSW.

Mental Health

Due to their skin condition, people who are going through topical steroid withdrawal go through periods of anxiety, sadness, or social isolation. Chronic scratching, agitation, and insomnia may make this worse. Truly crippling stigma and self-consciousness over the texture of their skin can also occur.

To improve the mental health of individuals going through topical steroid withdrawal (TSW), it’s crucial to offer emotional support by creating a non-judgmental space for people to share their feelings.

Encourage participation in TSW support groups where they can connect with others who share similar experiences and gain valuable advice. Providing education about TSW with reliable information is essential, validating their struggles.

Suggest seeking therapy or counseling to learn coping strategies and manage emotional challenges effectively. Teach stress-reduction techniques like meditation and yoga, engage in enjoyable activities to distract from discomfort, and maintain a positive outlook by celebrating small victories and fostering hope for eventual healing. Promote a healthy lifestyle encompassing a balanced diet and regular exercise to enhance overall well-being.

Identify and avoid triggers that may exacerbate TSW symptoms, encourage social connection with friends and family, establish a daily routine that includes self-care and hygiene, manage expectations regarding the duration and progress of TSW, and consider medication in severe cases as part of treatment.

Discourage comparisons with others’ TSW journeys and emphasise the importance of seeking guidance from a dermatologist for skincare and progress monitoring. In cases of severe depression or anxiety, it’s essential to seek immediate professional help.

Conclusion

Topical corticosteroids (TCS) and hydrocortisone creams may effectively treat eczema, even in severe cases, but may present addictive outcomes in some individuals. Stopping these steroids can cause “topical steroid withdrawal” (TSW), more common in adult women using potent steroids in sensitive areas.

Topical steroid addiction (TSA) involves needing stronger steroids over time, leading to a repeating pattern called steroid addiction syndrome. TSW diagnosis relies on criteria like prolonged steroid use, post-discontinuation symptoms, and factors like atopy. Subtypes include erythema edematous and papulopustular.

Treatment involves gradually discontinuing the use of topical steroids under the guidance of a healthcare professional. Other supportive treatments, such as moisturizers, antihistamines, and non-steroidal anti-inflammatory creams, may be used to manage symptoms during this process.

Supervised steroid discontinuation, support therapies, and unconventional methods like No Moisture Treatment (NMT), tapering of the steroids, and cold compress applications may help as well. The mental health of the individuals must be taken into account as well. The risk of TSW is often associated with prolonged and frequent use of high-potency topical corticosteroids, especially in sensitive areas of the body.

Treatment for TSW typically involves consulting a dermatologist or healthcare provider which is essential for the proper diagnosis and management of TSW. While there is no current cure for topical steroid withdrawal, there are emerging ways that people manage their specific symptoms they are experiencing during the withdrawal period from topical steroids.

Our mission here at TSW Assist is to uncover insights on products, methods, routines and therapies that are trending in efficacy within the TSW community.

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