Understanding Topical Steroid Withdrawal (TSW).
Causes and Symptoms of TSW.
What's Happening Under The Surface?
Tell-Tale Signs of TSW.
Different Stages of TSW.
Avoiding and Managing TSW.
Therapies and Support for TSW.
Key Takeaways
TSW occurs due to abrupt withdrawal from long-term use of potent steroids, affecting sensitive areas such as the face/neck and armpits/groins.
TSW symptoms transition from rashy to flushed, accompanied by shifting sensations of itching, burning, and stinging.
TSW presents four stages: inflammation, flaking, remodelling, and recovery, each with distinctive characteristics.
Regular use of fragrance-free moisturisers, phototherapy, immunosuppressants, and mental health support can help manage TSW.
The Proton Health app offers unique resources and tools to understand triggers and manage symptoms of TSW effectively.
Topical steroids are an important therapy that is often used to treat a variety of conditions including Eczema, Psoriasis and other skin conditions. However, the long-term use of moderate-strong steroids on sensitive areas like the face and neck can cause a condition called TSW (Topical Steroid Withdrawal). TSW is a relatively new phenomenon, and we’re only beginning to fully understand it. In this blog post, we will cover everything you need to know about TSW, including its tell-tale signs, how to avoid it, and ways to ease its symptoms.
What is TSW?
TSW is a skin condition that occurs as a reaction to the withdrawal of steroids after long-term use. It can happen after using steroids for a lengthy period or a strong dose, then suddenly stopping. The condition is thought to be caused by the long-term use of moderate-potent steroids on sensitive areas like the face and neck. The research shows that most individuals with TSW were using mid to high-potency (strength) steroids and used them daily for an extended time, often more than 12 months.
Typical symptoms of TSW include
Sudden redness, especially on the cheeks, with the nose remaining clear
Small bumps that are pus-filled or raised patches of changed skin colour
Massive skin shedding and flaking with swelling
Random burning/stinging pain that is made worse by sunlight and heat.
These symptoms often appear a few days to weeks after steroids are stopped. It is essential to note that TSW affects sensitive areas such as the face/neck and armpits/groins only. The areas of redness often spread to new places that had never bothered sufferers, and there is usually a shift between itching to burning and stinging. The skin may change from ‘rashy’ to more flushed, like a sunburn.
What's Happening Under The Surface?
While scientists are still trying to fully understand why TSW happens, they believe it's due to a combination of several factors.
Skin Barrier Disruption: Our skin acts as a protective barrier, keeping out harmful substances and retaining moisture. Extended use of steroids can weaken this barrier, making the skin vulnerable and sensitive. When you stop using the steroid cream, your skin tries to repair itself, leading to symptoms like redness, peeling, and swelling.
Changes in Immune Response: Steroids work by suppressing our immune system to reduce inflammation. Long-term use might cause the immune system to "get used to" the presence of the steroid. Once the steroid is removed, the immune system can overreact, resulting in an inflammatory response that presents as a rash or other TSW symptoms.
Alterations in the Hypothalamic-Pituitary-Adrenal (HPA) Axis: This is a complex set of interactions between two parts of the brain (the hypothalamus and pituitary gland) and the adrenal glands, which are small glands located above the kidneys. This axis is responsible for controlling our body's response to stress, among other things. Prolonged topical corticosteroid use can suppress this system. Once the TCS is stopped, this axis may over-respond, leading to various symptoms, including those seen in TSW.
In essence, TSW happens because our body gets so used to the presence of the topical steroid that it struggles to adjust when it's no longer there. This adjustment process can trigger a range of symptoms that, although uncomfortable and sometimes severe, are signs that your body is trying to restore its balance.
What are the tell-tale signs of TSW?
TSW presents with a few unique tell-tale signs, including:
Affecting sensitive areas such as the face/neck and armpits/groins only.
Symptoms appear after long-term use of steroids and suddenly stopping the medication.
The areas of redness often spread to new places that had never bothered sufferers.
There’s usually a shift between itching to burning and stinging.
The skin may change from ‘rashy’ to more flushed, like a sunburn.
What are the different stages?
Stage 1: Inflammation: This is the first stage of TSW, and it is characterised by redness, swelling, and itching. The skin may also be oozing or crusting. This stage can last for a few weeks or even months.The inflammation stage is often the most difficult stage of TSW. The itching can be so severe that it can be difficult to sleep or concentrate.
Stage 2: Flaking: This stage is characterised by the skin flaking off. The skin may be very dry and sensitive. This stage can last for a few weeks or even months.The flaking stage is often characterised by the skin flaking off in large sheets. This stage can be uncomfortable, but it is a sign that the skin is healing.
Stage 3: Remodelling: This stage is characterised by the skin rebuilding itself. The skin may be red and bumpy, and it may be very sensitive. This stage can last for a few months or even years. This stage can be frustrating, as the skin may not look its best. However, it is a sign that the skin is healing.
Stage 4: Recovery: This is the final stage of TSW, and it is characterised by the skin returning to normal. This stage can take several months or even years.
It is important to note that not everyone experiences all four stages of TSW. Some people may only experience one or two stages, and the severity of the symptoms can vary from person to person.
How to avoid TSW?
Preventing Topical Steroid Withdrawal (TSW) revolves around using topical corticosteroids (TCS) responsibly, ensuring that their benefits outweigh any potential risks. Here are more detailed tips to help avoid TSW:
Follow the 'Goldilocks Zone': Using the right amount of topical corticosteroids (TCS) is essential for managing symptoms effectively without experiencing unwanted side effects. It's important to find a balance, known as the 'Goldilocks Zone,' where you apply enough days of TCS to control symptoms but avoid overdoing it. This balance can be challenging to find but it's often 7-14 days for the Face and Neck and upto 14 days for the rest of the body. If you need help on how long to use each one, check out our handy guide here.
Use The 'Finger Tip Rule': The Finger-Tip Rule is a simple way to estimate the appropriate amount of TCS to apply. Take a line of cream or ointment from the tip of your finger to the first crease. This amount usually covers an area about the size of two adult hands placed flat. Following this rule helps ensure that you're using enough TCS to treat the affected area effectively. If you're unsure about the right amount to use or have any concerns, it's always a good idea to consult with your healthcare provider.
Always Take Holiday Periods: If you need to use steroids regularly, make sure you're taking plenty of breaks. The length of each break should be as long as you;ve been using them for. E.g. if you've been using steroids for 7 days in a row, make sure you avoid using them for the next 7 days before starting to use them again.
Use the Weakest Strength that Works: There are many different strengths of topical steroids. Always use the least potent one that effectively manages your symptoms.
Monitor for Signs of TSW: Regularly check your skin for signs of TSW, such as redness, burning, stinging, or an unusually severe rash. If you notice these signs, consult with your healthcare professional.
Consider Alternatives: If appropriate, consider non-steroidal alternatives for managing your skin condition, such as moisturisers, Niacinamide, barrier creams, or other topical medications like calcineurin inhibitors.
Supervised Withdrawal: If you've been using topical steroids for a long time, don't stop abruptly. Instead, seek advice from your healthcare professional. They can guide you through a gradual, supervised withdrawal process, which can significantly decrease the risk of TSW.
Methods To Tackle TSW Symptoms
Alleviating Itching and Burning:
Antihistamines: These over-the-counter medications reduce itching by blocking the action of histamine, a substance in the body that causes allergic symptoms. One review published in the journal American Family Physician indicates that non-sedating antihistamines, such as cetirizine or loratadine, can effectively tackle itching.
Cool Compresses: A simple and effective home remedy, cool compresses can provide immediate relief for burning skin. The cold can help numb the skin, reducing itch and inflammation.
Temperature Regulation: Hot water can strip the skin of its natural oils, causing dryness and irritation. Short, lukewarm baths or showers are gentler on the skin.
Soothing Topicals: Creams or lotions containing aloe vera or calamine can provide temporary relief from itching and burning. Aloe vera, in particular, has been shown in several studies, to have anti-inflammatory and wound-healing properties.
Oatmeal Baths: Colloidal oatmeal, a product made from finely ground oats, has been used for centuries to soothe irritated skin. The Journal of Drugs in Dermatology suggests that it works by forming a protective barrier on the skin, reducing dryness and itch.
Therapies:
Moisturisers: Regular use of fragrance-free moisturisers can help maintain the skin's barrier function, reduce dryness, and alleviate itch. It's recommended that you apply moisturisers at least 3 times a day and seek beneficial ingredients such as Ceramides and Hyaluronic acid.
Non-Steroidal Topicals: Emollients, barrier creams and other products such as Niacinamide help protect the skin and maintain its moisture, relieving symptoms of TSW. You'll find many more therapies and suggested skincare routines in our skincare products guide here.
Phototherapy: Also known as light therapy, phototherapy exposes the skin to certain wavelengths of ultraviolet (UV) light under medical supervision. According to the British Association of Dermatologists, phototherapy can be an effective treatment for various skin conditions by reducing inflammation.
Immunosuppressants: These prescription medications, like cyclosporine or methotrexate, work by dampening the immune system's activity, reducing inflammation and alleviating symptoms of TSW. They are typically prescribed by a dermatologist or GP if symptoms are severe or not responsive to other treatments. Remember, these powerful drugs come with potential side effects and require careful monitoring by a healthcare professional.
Mental Health Support:
Counselling and Medication: Dealing with TSW can be emotionally taxing. Various healthcare organisations offer counselling services to discuss and help with the mental health burden of TSW. Proton Health is also the first provider of eczema behavioural therapy. A unique programme of guided audio and reflective sessions designed to improve your confidence, self-esteem, sense of happiness and overall relationship with the condition. You'll also find more resources on tackling different challenging situations and how to improve your mental health here.
Online Support Groups: Connecting with others who understand your experience can be beneficial. UK-based organisations like the National Eczema Society offer online forums where individuals can share experiences and advice. You'll also find support groups on Reddit and within the Proton Health app.
Other Strategies:
Tapering Off Steroids: Reducing the use of topical steroids gradually, rather than stopping abruptly, can prevent a rebound flare of symptoms. This should be done under the supervision of a healthcare professional.
Document Progress: Keeping a record of your symptoms can help you to begin understanding your triggers. You can do this on autopilot within the Proton Health app by using our technology to automatically understand what's causing your flare-ups. You'll find out more by reading on below…
Clinical Trials: Participating in clinical trials can provide access to new potential treatments. The UK Clinical Trials Gateway provides information on UK trials in which you can participate.
No Moisturiser Therapy (NMT) in TSW
No Moisturiser Therapy (NMT) is a management strategy some people with Topical Steroid Withdrawal (TSW) use to manage their symptoms. The approach, as the name implies, involves not using any moisturisers on the skin.
NMT operates on the idea that ceasing the use of moisturisers can help enhance the skin's natural barrier functions and speed up the healing process. It's thought that constantly applying moisturisers can make the skin 'lazy' and overly dependent on these external sources of hydration. By stopping moisturiser use, the theory suggests that the skin is forced to self-moisturise, thereby gradually restoring its natural functioning.
The process of implementing NMT usually involves several steps. It starts with completely stopping the use of all moisturising products, including lotions, creams, and even lip balms. You also limit the amount of water exposure to your skin. This means taking short, infrequent showers and not soaking in baths. It's also advised to avoid excessive sweating and to stay in a cool, dry environment as much as possible.
As for evidence, it's important to note that NMT is a relatively new concept in the management of TSW, and it hasn't been extensively studied in controlled clinical trials. Anecdotal evidence from individuals who have tried NMT suggests it can be beneficial, but it also can be extremely challenging, especially in the initial stages when the skin can feel extremely dry and tight. This approach requires a strong commitment and a willingness to endure a potentially difficult adjustment period.
It's crucial to consult with a healthcare professional before embarking on NMT or any other new treatment approach for TSW. What works for one person may not work for another, and it's essential to have professional guidance to ensure the safety and effectiveness of your treatment plan. The Proton Health app can help you track your symptoms and progress if you decide to try NMT, providing a valuable tool to share with your healthcare provider.
Introducing Proton Health: The World's First App For Topical Steroid Withdrawal Management
Navigating the challenging journey of Topical Steroid Withdrawal (TSW) is now made easier with the pioneering Proton Health app. As the first-ever app specifically designed for TSW, Proton Health brings personalised care, symptom tracking, and evidence-based techniques to your fingertips, revolutionising how TSW is understood and managed.
Your Unique TSW Triggers Identified
Each person's TSW experience is unique - different triggers may lead to flare-ups for different individuals. These triggers can be related to weather conditions, specific foods, or personal stress levels. Proton Health provides an easy-to-use platform for logging and tracking these potential triggers. By understanding what could be causing your TSW flare-ups, you and your healthcare provider can craft a management plan that's uniquely tailored to you.
Personal Skin Health Coach: Your Companion in the TSW Journey
Proton Health isn't just a symptom and trigger tracker—it's your personal Skin Health Coach. The app monitors your progress, offering personalised advice and suggestions tailored to your unique situation. You're not alone on your TSW journey; Proton Health is with you every step of the way.
One standout feature of the Proton Health app is the creation of personalised skincare routines designed for individuals with TSW. The app uses the information you provide to craft a routine that specifically caters to your skincare needs. This unique feature sets Proton Health apart, providing a new level of support for those managing TSW symptoms.
Evidence-Based Techniques and Mental Health Support
A key aspect of the Proton Health app is its focus on providing evidence-based techniques for managing TSW. These scientifically-backed methods help ensure you're getting the most effective treatment possible. Furthermore, the Proton Health app also supports mental wellbeing through our TSW Behavioural Therapy Programme. We acknowledge that dealing with TSW can be mentally challenging. Our goal is to provide you with strategies to manage these challenges, so you can feel supported in all aspects of your TSW journey. You'll find a free session at the bottom of the page to try!
With the Proton Health app, we empower individuals with TSW to take control of their journey towards better skin health. By harnessing the power of technology, Proton Health offers an unprecedented level of personalised care and support.
Conclusion
TSW is a condition caused by the long-term use of moderate-potent steroids on sensitive areas like the face and neck. It presents with unique tell-tale signs, including sudden redness, small pus-filled bumps, massive skin shedding, and burning/stinging pain. Prevention is always better than cure, so stick to the goldilocks zone and finger-tip rule to avoid TSW. If you have been using steroids for a long time, get in touch with your healthcare professional for a supervised withdrawal. For those who are suffering from TSW, ensure that you have a strong support network, and regularly seek professional help to ease symptoms.
In summary, TSW is a challenging condition, but with proper care and treatment, individuals can overcome it. Stay strong and stay hopeful, Proton Health is here to help you through your journey.
Other Resources
The National Eczema Association provides resources and information about various skin conditions, including TSW.
The International Topical Steroid Awareness Network is a network committed to raising awareness about TSW and providing support for those affected.
American Academy of Dermatology offers a wealth of information about various skin conditions and treatments.
Proton Health App is a dedicated resource for those suffering from TSW.
Mental Health America provides resources for those who may be dealing with mental health challenges during their journey with TSW.
Topical Steroid Withdrawal (TSW) results from the sudden stopping of potent steroid, causing symptoms like redness, swelling, and flaking.
TSW symptoms transition from itching to burning and stinging, while the affected skin appears flushed, mimicking a sunburn.
TSW unfolds through inflammation, flaking, remodelling, and recovery stages, not all of which may be experienced by every individual.
Management includes therapies like moisturisers, non-steroidal topicals, phototherapy, immunosuppressants, and mental health support, providing relief from symptoms.
Proton Health app's unique features allow for efficient symptom tracking, behavioural therapy, and a community for shared experiences and advice.
