What Causes Topical Steroid Withdrawal?

May 26, 2024

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Topical steroid withdrawal (TSW), also known as corticosteroid withdrawal syndrome or red skin syndrome, is a rare but serious condition that can occur when someone stops using topical corticosteroid medications after prolonged or inappropriate use[1]. It is characterized by severe burningstinging, and red skin that appears within days to weeks of discontinuing the topical steroid.

The main cause of TSW is the prolonged use of topical corticosteroids, especially high-potency ones, on sensitive areas like the face or genitals[1][2]. Other factors that increase the risk of developing TSW include:

  • Frequent application of topical steroids (more than twice daily)
  • Using topical steroids for longer than 2-4 weeks continuously
  • Abruptly discontinuing topical steroids instead of tapering gradually
  • Having an underlying skin condition like eczema or psoriasis
  • Individual susceptibility to steroid dependence

To understand how TSW develops, it’s important to know how topical corticosteroids work. These medications are synthetic versions of hormones naturally produced by the adrenal glands. When applied to the skin, they reduce inflammation and suppress the immune system[1].

With prolonged use, the skin becomes “addicted” to the steroid and unable to function normally without it. The blood vessels in the skin dilate, causing redness and burning when the steroid is withdrawn[1]. The skin’s natural barrier also becomes disrupted, leading to dryness, flaking, and increased sensitivity.

Topical Steroid Potency and TSW Risk

The potency of the topical steroid plays a significant role in the risk of developing TSW. Topical steroids are classified into seven categories based on their strength, with class I being the most potent and class VII the least[1].

Examples of commonly prescribed topical steroids include:

Potency ClassExample Medications
I (Super Potent)Clobetasol propionate 0.05%
II (Potent)Fluocinonide 0.05%
III (Upper Mid-Strength)Triamcinolone acetonide 0.5%
IV (Mid-Strength)Mometasone furoate 0.1%
V (Lower Mid-Strength)Hydrocortisone valerate 0.2%
VI (Mild)Desonide 0.05%
VII (Least Potent)Hydrocortisone 1%, 2.5%

In general, the higher the potency of the topical steroid and the longer it is used, the greater the risk of developing TSW[1]. However, even low-potency steroids can cause TSW if used inappropriately.

Sensitive Skin Areas and TSW

Certain areas of the body are more susceptible to the side effects of topical steroids, including TSW. These sensitive areas include:

  • Face, especially eyelids and perioral region
  • Genitals and groin
  • Armpits
  • Scalp
  • Skin folds like the neck and inner elbows/knees

The skin in these areas is thinner and more permeable, allowing the steroid to be absorbed more readily. Blood vessels are also closer to the surface, making the skin more reactive to changes in steroid levels[1].

Applying topical steroids to these delicate areas for more than a few days can significantly increase the risk of TSW and other adverse effects like skin atrophy, telangiectasia (spider veins), and perioral dermatitis[2]. If a topical steroid is needed on a sensitive area, it’s crucial to use the lowest potency possible and for the shortest duration, under the guidance of a dermatologist.

Abrupt Discontinuation and TSW

One of the most significant risk factors for TSW is abruptly stopping a topical steroid after prolonged use, rather than gradually tapering the dose[1]. When a steroid is used for more than a few weeks, the skin becomes dependent on it to control inflammation. Suddenly withdrawing the steroid can cause a rebound effect, where the skin’s natural steroid production is suppressed and unable to regulate inflammation on its own.

Tapering a topical steroid involves gradually reducing the frequency of application or switching to a lower potency formulation over a period of weeks to months. This allows the skin time to adjust and resume its normal functions. However, even with careful tapering, some individuals may still experience TSW symptoms.

The duration of topical steroid use before developing TSW varies from person to person. Some may develop symptoms after a few months of continuous use, while others may use topical steroids for years without issue[1]. It’s thought that individual factors like skin barrier function, immune response, and genetic predisposition play a role in determining susceptibility to TSW.

Symptoms of Topical Steroid Withdrawal

The symptoms of TSW can be divided into two main categories: skin-related and systemic. Skin symptoms are often the most noticeable and distressing, but the systemic effects can also have a significant impact on quality of life.

Skin Symptoms of TSW

The hallmark skin symptoms of TSW are:

  • Red, burning, stinging skin that feels like it’s on fire
  • Intense itching that doesn’t respond to usual treatments
  • Dry, flaky, peeling skin that sheds excessively
  • Swelling and edema, especially on the face and genitals
  • Oozing, weeping, and crusting of the skin
  • Skin sensitivity and pain to the touch
  • Pustules (pus-filled bumps) and skin infections

These symptoms often appear within days to weeks of stopping the topical steroid and can be more severe than the original skin condition being treated[1]. They tend to start in the area where the steroid was applied but can spread to other parts of the body over time.

As TSW progresses, other skin changes may develop, such as:

  • Skin thinning and fragility due to loss of collagen
  • Stretch marks (striae) from rapid skin swelling and contraction
  • Hyperpigmentation (darkening of the skin) or hypopigmentation (lightening of the skin)
  • Elephant wrinkles, a thickening and wrinkling of the skin, especially in flexural areas like the elbow and knee creases

The severity and duration of skin symptoms vary widely among individuals. Some may have milder symptoms that resolve within a few weeks, while others may experience severe, debilitating symptoms that persist for months to years[1].

Systemic Symptoms of TSW

In addition to skin symptoms, TSW can cause a range of systemic symptoms that affect the whole body. These may include:

  • Insomnia and sleep disturbances due to pain and itching
  • Fatigue and weakness that makes daily activities challenging
  • Anxiety, depression, and mood changes related to the physical and emotional stress of TSW
  • Appetite changes and weight loss from the metabolic effects of steroid withdrawal
  • Fever and chills, especially during flares of symptoms
  • Muscle and joint pain that may mimic fibromyalgia or arthritis
  • Gastrointestinal issues like nausea, vomiting, and diarrhea
  • Headaches and dizziness from changes in blood pressure and electrolyte balance

These systemic symptoms are thought to be due to the body’s adrenal glands suppressing natural steroid production after prolonged exposure to topical steroids[1]. As the body adjusts to the absence of the medication, it can take time for the adrenal glands to resume normal function.

The psychological impact of TSW cannot be overstated. Many individuals with TSW experience significant distress, social isolation, and a reduced quality of life due to the physical symptoms and visible skin changes[1]. The cyclical nature of TSW, with periods of improvement followed by flares of symptoms, can also contribute to feelings of frustration and hopelessness.

It’s important for individuals with TSW to have a strong support system and access to mental health resources to help cope with the challenges of the condition. Connecting with others who have experienced TSW through online support groups or in-person meetups can provide valuable validation, information, and encouragement.

Diagnosing Topical Steroid Withdrawal

Diagnosing TSW can be challenging because the symptoms can mimic those of other skin conditions like eczema, psoriasis, or contact dermatitis. There is no specific test for TSW, so diagnosis relies on a thorough history and physical examination by a knowledgeable healthcare provider.

Some key factors that suggest a diagnosis of TSW include:

  • History of prolonged or frequent topical steroid use, especially on the face or genital area
  • Worsening of skin symptoms within days to weeks of stopping the steroid
  • Burning, stinging, and redness that is out of proportion to the original skin condition
  • Failure to respond to traditional treatments for eczema or psoriasis
  • Spreading of symptoms to areas of the body where the steroid was not applied

A skin biopsy can help rule out other conditions that may mimic TSW, such as fungal infections or cutaneous T-cell lymphoma. However, the biopsy results in TSW are often nonspecific and not diagnostic on their own.

It’s important for individuals who suspect they have TSW to seek care from a dermatologist or other provider who is familiar with the condition. Many healthcare professionals are not aware of the potential for topical steroid withdrawal and may misdiagnose it as an exacerbation of the original skin condition[1].

Ruling Out Other Conditions

Several skin conditions can present with symptoms similar to TSW and need to be ruled out before making a diagnosis. These include:

  • Atopic dermatitis (eczema) – chronic, relapsing inflammatory skin condition that causes dry, itchy, and red skin. May worsen when topical steroids are discontinued, but typically responds to moisturizers and other anti-inflammatory treatments[2].
  • Psoriasis – autoimmune condition that causes well-defined, red, scaly plaques on the skin. May initially improve with topical steroids but can flare when they are stopped. Usually responds to other treatments like vitamin D analogs, coal tar, or systemic medications[3].
  • Contact dermatitis – red, itchy, and sometimes blistering rash that develops after exposure to an irritating substance or allergen. May be mistaken for TSW if the trigger is a component of the topical steroid itself, such as propylene glycol or lanolin.
  • Fungal infections – overgrowth of yeast or dermatophyte fungi on the skin that can cause redness, scaling, and itching. May be mistaken for TSW, especially in warm, moist areas like the groin or under the breasts.
  • Scabies – contagious skin infestation caused by the Sarcoptes scabiei mite. Causes intense itching and small, red bumps or blisters, often in webbed areas between the fingers and toes. May be mistaken for TSW due to the itching and rash.

A thorough evaluation by a dermatologist, including skin scrapings or biopsies if needed, can help differentiate these conditions from TSW. It’s important to get an accurate diagnosis to ensure appropriate treatment and avoid further damage to the skin.

Managing Topical Steroid Withdrawal

There is no one-size-fits-all approach to managing TSW, as the severity and duration of symptoms can vary widely from person to person. The primary goals of treatment are to control symptoms, support skin healing, and prevent complications.

The first step in managing TSW is to discontinue the use of topical steroids under the guidance of a healthcare provider. This may involve a gradual taper to minimize the risk of severe rebound symptoms, or an abrupt discontinuation if the steroid has only been used for a short period of time[1].

Skin Care During TSW

Gentle skin care is essential to support skin healing and minimize irritation during TSW. Some key strategies include:

  • Moisturizing frequently with fragrance-free, hypoallergenic creams or ointments to combat dryness and itching. Look for products with nourishing ingredients like ceramides, hyaluronic acid, and petrolatum.
  • Taking lukewarm baths or showers and avoiding hot water, which can further dry and irritate the skin. Use mild, non-soap cleansers and avoid scrubbing or exfoliating.
  • Applying cool compresses or taking colloidal oatmeal baths to soothe burning and stinging sensations.
  • Wearing loose, breathable clothing made from soft, natural fibers like cotton to minimize friction and irritation. Avoid rough fabrics like wool or synthetics that can trap heat and moisture.
  • Using a humidifier in dry indoor environments to add moisture to the air and prevent further drying of the skin.
  • Protecting the skin from the sun with broad-spectrum sunscreen, protective clothing, and hats when outdoors. UV radiation can further damage the skin and worsen hyperpigmentation.

The National Eczema Association has a helpful list of moisturizers and cleansers that are suitable for sensitive skin during TSW[2]. It’s important to patch test any new products before applying them widely to the skin to avoid potential irritation or allergic reactions.

Medications for TSW

While there is no cure for TSW, certain medications may be used to manage specific symptoms under the guidance of a dermatologist or other healthcare provider. These may include:

  • Oral antihistamines like diphenhydramine or hydroxyzine to reduce itching and improve sleep. Non-sedating antihistamines like cetirizine or loratadine may be used during the day.
  • Topical calcineurin inhibitors like tacrolimus or pimecrolimus, which are non-steroidal anti-inflammatory medications that can be used on sensitive areas like the face and genitals. They do not cause skin thinning like topical steroids but may cause a temporary burning sensation when first applied[2].
  • Oral antibiotics like cephalexin or dicloxacillin to treat secondary bacterial skin infections that can occur due to scratching and skin breakdown.
  • Oral corticosteroids like prednisone, which are rarely used in severe cases of TSW to quickly control inflammation. However, they can cause rebound symptoms when discontinued and are not recommended for long-term use[1].
  • Immunosuppressant medications like cyclosporine or methotrexate, which may be used in severe, refractory cases of TSW under close monitoring by a dermatologist. These medications can have serious side effects and require regular blood tests[1].

The risks and benefits of any medication for TSW must be carefully weighed, as some treatments can have significant side effects or interact with other medications. It’s important to follow the prescribing provider’s instructions closely and report any adverse reactions.

Phototherapy for TSW

Narrowband UVB phototherapy is a treatment that uses artificial ultraviolet light to reduce skin inflammation and promote healing. It is usually administered 2-3 times per week in a dermatologist’s office or at home with a prescription device.

Studies have found that narrowband UVB phototherapy can be an effective adjunctive treatment for TSW, particularly for reducing itching and promoting skin healing. However, it may not be appropriate for everyone, especially those with very fair skin or a history of skin cancer.

Phototherapy works by suppressing the immune system in the skin and reducing inflammation. It also helps to thicken the skin and improve its barrier function, which can be impaired in TSW.

If considering phototherapy for TSW, it’s important to work with an experienced dermatologist who can determine the appropriate dosing and frequency of treatments. Consistency is key for optimal results, and it may take several weeks to see improvement.

Alternative and Complementary Therapies

Many individuals with TSW seek out alternative and complementary therapies to help manage their symptoms, although the evidence for their effectiveness is limited. Some options that may be worth discussing with a healthcare provider include:

  • Acupuncture – a traditional Chinese medicine technique that involves inserting thin needles into specific points on the body to alleviate pain and promote healing. Some studies suggest it may help reduce itching and inflammation in TSW.
  • Herbal medicine – the use of plant-based remedies to treat various health conditions. Certain herbs like licorice root, chamomile, and calendula have anti-inflammatory and skin-soothing properties that may be helpful in TSW. However, it’s important to work with a qualified herbalist and inform your doctor of any supplements you are taking to avoid potential interactions.
  • Stress-reduction techniques – practices like meditation, deep breathing, yoga, and tai chi that can help manage the emotional stress and anxiety that often accompany TSW. Engaging in relaxing activities and hobbies can also be beneficial.
  • Dietary modifications – some individuals with TSW find that certain foods seem to trigger or worsen their symptoms. Common culprits include dairy, gluten, sugar, and processed foods. Keeping a food diary and working with a registered dietitian may help identify potential triggers and guide dietary changes.

It’s important to remember that alternative therapies should not replace conventional medical treatment for TSW, but rather be used in conjunction with it. Always inform your healthcare providers about any complementary therapies you are using to ensure safety and avoid potential interactions.

Coping with the Psychological Impact of TSW

The physical symptoms of TSW can be incredibly distressing, but the psychological impact of the condition cannot be overstated. Many individuals with TSW experience significant anxiety, depression, and social isolation due to the visible changes in their appearance and the constant discomfort and pain.

Some strategies that may help cope with the emotional challenges of TSW include:

  • Seeking support from loved ones – talking openly with friends and family about what you are going through and how they can help, whether it’s providing a listening ear, helping with daily tasks, or offering distractions and encouragement.
  • Connecting with others who have TSW – joining online support groups like the ITSAN (International Topical Steroid Addiction Network) forum or following TSW bloggers and social media accounts can help you feel less alone and provide valuable tips and resources for managing the condition.
  • Working with a therapist – finding a mental health professional who has experience with chronic health conditions can provide a safe space to process difficult emotions and develop coping strategies. Cognitive-behavioral therapy (CBT) may be particularly helpful for managing TSW-related anxiety and depression.
  • Practicing self-care – engaging in activities that bring joy and relaxation, such as reading, listening to music, spending time in nature, or pursuing a hobby, can help counteract the stress and negativity of TSW. Be kind and patient with yourself, and celebrate small victories along the way.
  • Focusing on the present – TSW can feel like a never-ending journey, but try to focus on getting through one day at a time. Mindfulness meditation and deep breathing exercises can help cultivate a sense of calm and present-moment awareness.

It’s important to remember that healing is not a linear process, and there will be ups and downs along the way. Surround yourself with a supportive team of healthcare providers, family, and friends, and don’t hesitate to reach out for help when needed.

If you are having thoughts of self-harm or suicide, know that you are not alone and that help is available. Contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or text the Crisis Text Line at 741741 for immediate support.

Preventing Topical Steroid Withdrawal

The best way to prevent TSW is to use topical corticosteroids as directed by a healthcare provider and to be aware of the potential risks of long-term or inappropriate use. Some key strategies for preventing TSW include:

  • Using the lowest potency steroid needed to control symptoms, and only for the shortest duration necessary. Follow the prescribing provider’s instructions carefully.
  • Applying a thin layer of the steroid to affected areas only, not to healthy skin. Avoid using more than the recommended amount or frequency.
  • Not using topical steroids continuously for more than 2-4 weeks without a break, unless directed by a dermatologist. If longer-term use is necessary, work with your provider on a tapering plan to minimize the risk of withdrawal.
  • Avoiding use on sensitive areas like the face, genitals, and skin folds unless specifically directed by a dermatologist. These areas are more prone to steroid absorption and side effects.
  • Being cautious with “natural” or “herbal” remedies for eczema or psoriasis, as some may contain undisclosed steroids that can lead to TSW. Stick to products recommended by your dermatologist or the National Eczema Association.
  • Monitoring for signs of skin thinning, easy bruising, or stretch marks, which can be early indicators of steroid overuse. If you notice these changes, contact your dermatologist promptly.
  • Seeking regular follow-up with your dermatologist or prescribing provider to assess the effectiveness and safety of your topical steroid regimen. Don’t hesitate to ask questions or voice concerns about potential side effects.

For parents and caregivers of children with eczema or other inflammatory skin conditions, it’s especially important to use topical steroids judiciously and under close medical supervision. Children’s skin is more delicate and prone to absorption, so extra caution is warranted.

Remember, topical corticosteroids can be safe and effective treatments for many skin conditions when used appropriately. However, they are not without risks, and it’s important to be an informed and proactive patient to minimize the chances of developing TSW.

The Road to Recovery

Healing from TSW is a highly individual journey that requires patience, self-compassion, and a strong support system. While the process can be lengthy and challenging, most people with TSW do eventually achieve significant improvement in their symptoms and quality of life.

Some key milestones on the road to recovery may include:

  • Reduced itching and burning sensations, allowing for more comfortable sleep and daily functioning.
  • Improved skin texture and color, with less redness, dryness, and flaking over time.
  • Decreased skin sensitivity, making it easier to tolerate clothing, temperature changes, and other environmental factors.
  • Healing of open wounds and cracks in the skin, reducing the risk of infection and scarring.
  • Increased energy and mood, as the physical and emotional burden of TSW begins to lift.

It’s important to celebrate these milestones along the way and to focus on progress rather than perfection. Setbacks and flares are a normal part of the healing process and do not mean that you are back at square one.

As you continue on your journey with TSW, remember to:

  • Stay connected with your healthcare team and support system, and don’t hesitate to reach out for help when needed.
  • Be patient with yourself and the process, and trust that healing is possible with time and proper care.
  • Advocate for yourself and your needs, whether it’s with medical providers, employers, or loved ones.
  • Educate yourself about TSW and stay up-to-date on the latest research and treatment options.
  • Practice self-care and engage in activities that bring joy and meaning to your life, even on difficult days.

As more research is conducted on the mechanisms and management of TSW, there is hope for better prevention, diagnosis, and treatment of this challenging condition. In the meantime, know that you are not alone and that there is a growing community of individuals who understand what you are going through and are here to support you every step of the way.

Key Points

  • Topical steroid withdrawal (TSW) is a rare but serious condition that can occur from the prolonged, frequent, or inappropriate use of topical corticosteroids.
  • The main causes of TSW include using high-potency steroids for extended periods, applying them to sensitive areas like the face and genitals, and abruptly discontinuing them without tapering.
  • Symptoms of TSW can be severe and prolonged, and may include burning, stinging, and red skin, intense itching, skin peeling and oozing, and systemic effects like insomnia, fatigue, and depression.
  • Diagnosis of TSW is based on a careful history and physical examination by a knowledgeable dermatologist, as there is no specific test for the condition.
  • Management of TSW involves discontinuing topical steroids, gentle skin care, and medications for specific symptoms like itching and infection. Phototherapy and alternative therapies may also be helpful for some individuals.
  • The psychological impact of TSW can be significant, and it’s important to seek support from loved ones, mental health professionals, and the TSW community.
  • Prevention of TSW involves using topical steroids as directed, avoiding prolonged use on sensitive areas, and working closely with a dermatologist to monitor for signs of overuse.
  • While the road to recovery from TSW can be long and challenging, most people do eventually achieve significant improvement in their symptoms and quality of life with proper care and support.

Frequently Asked Questions

How long does topical steroid withdrawal last?

The duration of TSW varies widely from person to person, but symptoms can persist for weeks to months after discontinuing topical steroids. In some severe cases, full recovery may take several years. Working closely with a dermatologist and practicing gentle skin care and stress management can help support the healing process.

Can I use moisturizers or other topical treatments during TSW?

Yes, using gentle, fragrance-free moisturizers and emollients is an important part of managing TSW and supporting skin barrier function. Other topical treatments like calcineurin inhibitors may also be recommended by your dermatologist for specific symptoms. However, it’s important to avoid any products that contain steroids or other potential irritants.

Is TSW contagious?

No, TSW is not contagious. It is an individual reaction to the prolonged use of topical corticosteroids and cannot be spread from person to person.

Can diet affect TSW?

While there is no specific “TSW diet,” some people find that certain foods seem to trigger or worsen their symptoms. Common culprits include dairy, gluten, sugar, and processed foods. Keeping a food diary and working with a registered dietitian may help identify potential triggers and guide dietary changes. However, it’s important to remember that everyone’s experience with TSW is unique, and what works for one person may not work for another.

Can TSW be prevented?

The best way to prevent TSW is to use topical corticosteroids as directed by a healthcare provider, and to be aware of the potential risks of long-term or inappropriate use. This includes using the lowest potency steroid needed to control symptoms, applying it only to affected areas, and not using it continuously for more than 2-4 weeks without a break. Regular follow-up with a dermatologist can help monitor for signs of steroid overuse and guide appropriate tapering if needed.

If you suspect that you or a loved one may be experiencing symptoms of topical steroid withdrawal, know that you are not alone and that help is available. Reach out to a dermatologist or other healthcare provider who is knowledgeable about the condition for an evaluation and personalized treatment plan. With proper support and management, it is possible to navigate this challenging condition and ultimately achieve healthier, more resilient skin.

 

  • Sheary, B. (2018). Topical steroid addiction and withdrawal-An overview for GPs. Australian family physician, 47(10), 668-671.
  • Hajar, T., Leshem, Y. A., Hanifin, J. M., Nedorost, S. T., Lio, P. A., Paller, A. S., … & Simpson, E. L. (2015). A systematic review of topical corticosteroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses. Journal of the American Academy of Dermatology, 72(3), 541-549.
  • Juhász, M. L., Curley, R. A., Rasmussen, A., Malakouti, M., Silverberg, N., & Jacob, S. E. (2017). Systematic review of the topical steroid addiction and topical steroid withdrawal phenomenon in children diagnosed with atopic dermatitis and treated with topical corticosteroids. Journal of the Dermatology Nurses’ Association, 9(5), 233-240.
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