If you stumbled upon this article, chances are you or a loved one is battling Topical Steroid Withdrawal (TSW), a condition that can significantly impact one’s well-being. Despite affecting numerous individuals, TSW is far less acknowledged than other skin conditions like eczema, acne or rosacea. And there might be certain reasons behind it. What is Topical Steroid Withdrawal, what causes it and what to do about it? Let’s delve into it.
What is topical steroids meaning?
First, term “topical” refers to medications or treatments that are applied directly to the skin, as opposed to those taken orally. Topical steroids or corticosteroids are a group of drugs, that come in form of creams, ointments, gels or lotions. They reduce inflammation, itching, and redness in the affected area, providing relief for conditions like eczema, psoriasis, or allergic reactions. Here’s a simplified “sciencey” explanation of how they do that: Topical steroids work by attaching its receptors on the skin cells and changing the types and amounts of molecules the cell is making. Specifically, there are 3 main ways they manage symptoms for skin issues:
- By reducing inflammation signals and narrowing blood vessels, cells effectively minimize the flow of inflammatory molecules to the site. This reduces redness and inflammation on skin.
- Immune system suppression, which stops white blood cells attraction to the site, and their multiplication. As white blood cells contribute to the inflammation, calming them also helps reduce swelling, redness and itching.
- Decreasing cell production, as it’s needed for some skin conditions.
Steroid creams have been used as the main drug for atopic dermatitis for over 50 years and vary from mild to strong. These medications contain corticosteroids, which are man-made synthetic hormones that mimic the ones produced naturally by the body. Despite providing quick relief, there are several risks and side effects to be aware of. One of them is TSW disease.
What is Topical Steroid Withdrawal?
ITSAN, the International Topical Steroid Addiction Network, defines Topical Steroid Withdrawal as the experience of inflamed, itchy, and burning skin, often in extensive areas. These symptoms may appear when stopping or taking breaks from topical steroid treatment.
How do you develop TSW?
TSW sufferer’s initial concern is usually eczema and its various forms, such as atopic dermatitis or dyshidrotic eczema. It tends to be itchy, blistery, flaky, and sometimes even oozing. Doesn’t look good but feels even worse. In those cases topical steroids are usually prescribed, because they are affordable and provide quick relief. Sounds too good to be true, right? Well, it might be because TSW is a challenging condition caused by prolonged use of topical steroids. However, be aware that some people experience TSW after a short-term use too!
Topical steroid withdrawal may surface in the days or weeks after stopping the use of topical corticosteroids. It’s characterized by various harsh symptoms and is also referred to as topical steroid addiction, steroid withdrawal syndrome, or red skin syndrome. The issue with TSW disease is that it tends to produce worse symptoms than the initial skin condition! So if you notice your skin worsening after stopping with steroids or even while using steroids; “eczema” is all over your body or in places you’ve never had it before, chances are you’re dealing with TSW.
Most people find out about topical steroid addiction and the withdrawal symptoms via Social Media groups or Google. As this is not a discussion topic by doctors, oftentimes first reaction is disbelief and shock.
What causes Topical Steroid Withdrawal?
Well, we know that TSW skin syndrome is caused by steroid creams, but there’s no definitive understanding why such reaction happens. One theory is that stopping steroids results in your body releasing a substance that widens blood vessels under the skin. This could be the root of topical steroid withdrawal symptoms like redness and itching! Here’s a bit more specific theory from Scratch That:
Our body produces hormone cortisol, secreted by our adrenal glands. This regulates our metabolism, blood pressure, inflammation and stress response. Then there’s cortisone, a steroid medication, a synthetic version of cortisol.
While it was previously thought that cortisol was only produced by the adrenal glands, researchers found that our outermost skin layer also generates the hormone. Overexposure of these skin cells to cortisol (when using topical steroids) can change the skin cells and lead to atopic skin. High cortisol levels can affect how cells take in cortisol from around them.
Topical steroids also hold back the release of molecule called Nitric Oxide that widens blood vessels during inflammation. When there are no longer steroids present to produce cortisol that suppresses the release of Nitric Oxide, the ‘red skin syndrome’ is the result.
Likelihood of developing TSW is higher when using topical steroids long-term, as your body starts to become dependent on the medicine. You might need more of it to achieve the same outcome until at one point, they might not work at all. Sometimes, people may experience TSW symptoms even after using steroid creams for a short period. That effect is particularly visible in small children, who haven’t lived enough years yet to be a long-time steroid creams user. Organisms are different, so it’s tough to predict how much it takes to trigger such reaction.
According to an article in WebMD, the risk of topical steroid addiction is higher, if you:
- Are a woman
- Use moderate- or high-strength steroid
- Apply the medicine to your face or genitals
- Use steroids every day for long period
- Don’t take any breaks from medicine
- Have allergies
So are steroid creams dangerous?
It is worth mentioning that many people use topical corticosteroids to ease their symptoms – short or long-term – with no serious side effects. The statistics for TSW occurrence are not yet known. However, steroid creams are meant to be used in courses and not daily throughout the years. So topical steroids definitely can be dangerous when using them non-stop. Besides TSW, there is also the risk of developing Cushing’s Syndrome with long-time corticosteroid usage. It is important to be aware of the potential risks and when deciding to relieve your eczema symptoms with steroids, at least follow the prescribed guidelines.
TSW stages and visual symptoms
TSW is a condition with many faces. Your skin goes through topical steroid withdrawal in four distinctive stages and it repeats in cycles. Each stage might look like an entirely different skin condition. Severities can vary from person to person, but here are the stages and how they look like:
- Inflammation. Discontinuing steroid creams can be jarring to the body, so it reacts strongly to the sudden withdrawal of substances it’s used to. Blood rushes to affected areas of the skin, initiating the healing process. Skin looks red, sometimes swollen, and is painful to touch – resembles to sunburn. There might be an overall unwell feeling.
- Oozing and scabbing. TSW oozing phase is one of the most unpleasant ones. Ooze, or exudate, is a yellowish liquid secreting from your damaged skin. It’s a blood serum – body’s natural response to inflammation, and plays a crucial role in the healing process. When wounds ooze, the liquid dries and hardens, forming crusts or scabs. These protective layers guard the wound and enable new skin to develop underneath, promoting healing. To put it simply, while this stage may not be pleasant, it is a sign of progress and is ultimately necessary for the body to heal properly. Be aware that severe oozing might be a sign of a skin infection!
- Flaking. In this stage the skin is extremely dry, the flakes are shedding with just moving, but especially when scratching. Why this happens, is that the skin cells are trying to rebuild themselves but the skin itself is not strong enough, so the cells get to the top and flake off.
- Remodelling. The eagerly anticipated stage of skin visibly remodeling itself – collagen synthesis is taking place, fortifying the skin tissue. You may even observe new lines forming on the skin.
+ Additional not-so-lovely visual symptom, that might occur throughout the journey and for some people, it’s the last one to go:
- Rough and wrinkly skin, known as “elephant skin”. Skin’s texture feels different, thickened and leathery. Often most visible on neck, fingers and knees.
Other TSW symptoms
Skin issues are often wrongly associated with appearance only, leading people to assume that the primary concern is unsightly blemishes. This assumption couldn’t be any further from the truth. In reality, those suffering from eczema or TSW are forced to endure extreme discomfort and lifestyle restrictions that go beyond the skin deep. What does “TSW skin” feel like?
- Severe itch. This is one of the most agonizing symptoms of TSW. Itch is there whatever you do, but showers and sweating are especially triggering. Ironically, the healing process itself also triggers itch, so it’s comforting to know that it’s a sign your body is on the path to recovery.
- Insomnia. As itch is usually worse at night time, it might cause sleepless nights. Some people have found relief by using CBD oil, herbal teas or even bandaging the most affected areas on your body.
- Feeling cold. Body’s thermoregulation is interrupted due to dysfunctional adrenal glands, damaged nerve cells and thinned skin, caused by use of Steroid Creams.
- Unpleasant smell from your skin. This is a bit surprising, but many TSW sufferers have reported their skin having a very specific metallic smell. Some TSW sufferers have also described their skin often feels wet.
- Depression and anxiety. As topical steroid withdrawal is such an overwhelming condition, it affects people mentally. Due to experiencing great discomfort, they might become less social and withdrawn (pun intended).
TSW isn’t recognized by medical field
Topical Steroid Withdrawal is acknowledged by National Eczema Society, but not by most of the dermatologists. Why? It is true, that most of the steroid creams users won’t develop TSW, but then there are numbers of those, who will. To give you a perspective, global corticosteroids (topical and oral steroids) market size is $5.26 billion in 2023 and is expected to grow to $8.19 billion by 2030. This fact itself says that TSW will be a growing problem too! Besides skin issues, corticosteroids are used to ease the symptoms of arthritis, asthma, allergies and many other conditions.
How to treat Topical Steroid Withdrawal?
Steroid cream withdrawal or red skin syndrome is a long-term condition that might put some aspects of your life on hold. It is important to try to manage it to maintain as normal life quality as possible. When discussing treatments for TSW, there are two main approaches – first one being natural remedies and the second one involving medications. As TSW is caused by modern medicine, many people have lost trust in it and avoid any kind of medical drugs, trying to heal it naturally. You can go both ways, but again, it is important to be aware of all the risks and side effects.
Medical treatment options for TSW skin
When visiting a doctor that doesn’t acknowledge TSW, they probably diagnose it as severe Eczema or Psoriasis. They offer you some treatment options, that probably relieve your TSW symptoms too, but come with their own possible side effects. All of these drugs suppress your immune system, but work a bit differently in your body:
- Immunosuppressants: These drugs work to suppress the immune system, with the hopes of reducing inflammation. Usually, chemically derived compounds are used. Examples are cyclosporine and methotrexate.
- Biologic Medication: class of medications that mimic normal molecules in living organisms or cells. They target specific proteins on a cellular level, involved in the inflammatory process. Opposite to immunosuppressants, biologics are made from biological materials such as blood cells. For TSW, the most used biologic is Dupixent.
- JAK inhibitors: an innovative drug that works by interfering with the signals in the body that are thought to cause inflammation. With less inflammation, the immune system calms down, resulting in less itchy and clearer skin. JAK inhibitor called Rinvoq is often used for TSW.
- Protopic ointment: a prescription medicine used on skin to relieve eczema symptoms. Doesn’t contain steroids, but has an active substance called tacrolimus, which also decreases activity of immune system. Many TSW sufferers report their condition worsening after adding protopics to their treatment. So be aware!
- Oral Steroids: After finishing with topical steroids, some doctors recommend a course of oral steroids to get the initial inflammation down and then continue with other options. Although oral steroids do not have a direct effect on the skin, they can be more taxing on the body as a whole and will still introduce steroids into the system.
How to treat Topical Steroid Withdrawal naturally?
Usually, a combination of different approaches relieve the symptoms of topical steroid withdrawal. Some of the most popular natural remedies include:
- Steroid cream withdrawal. The most obvious one, but quit using all kinds of steroid creams. Some people prefer to wean off slowly, while some end it overnight.
- Investigating your gut health, allergies and food intolerances. Having tests made can provide insights into the root cause of your eczema. Tests can shine a light on the source of your triggers, allowing you to better select foods that suit your body, which in turn could also reduce skin inflammation from TSW
- Switching to natural and fragrance free products, that are suitable for sensitive skin, can be beneficial in the healing process. Also keeping your home dust-free is a good idea.
- Adding supplements to your daily routine, such as Omega 3 fatty acids, Vitamin D, Collagen and probiotics, might help to reduce inflammation too. They each have an important role to play in skin health, so do your research and see which could help you!
- When it comes to moisturizing, there are two opposing approaches. Experienced TSW warriors know about the no moisture treatment (NMT), which requires to limit showers, liquid intake, and avoids using creams. The method trains the skin to self-generate its moisture, and it has proved effective for many people, as evidenced by TSW groups. Nevertheless, some individuals have reported the opposite outcome and opt for frequent moisturizing instead, which is also what most dermatologists advise.
- Therapies. There are several possible types of therapies that are stated to be beneficial to your skin and overall health. If interested, look into treatments as oxygen therapy, cryotherapy or light therapy. It’s also worth mentioning that fellow TSW sufferers have founded a clinic in Hampshire, UK, that specializes in helping people with TSW.
- Finally, try to maintain a healthy lifestyle with regular exercise and a nutritious diet. Stress is one of important factors affecting the development of skin diseases so having a positive attitude and plenty of rest can also go a long way in keeping the skin healthy.
Topical Steroid Withdrawal is a tough condition and in severe cases makes people bed-bound. Deciding between healing TSW naturally or seeking medical assistance is a very personal choice. However, for individuals who have school, work, or family duties, it can be challenging to manage without medication and with broken skin. There is also a risk of serious infections. On the other hand, taking strong immunosuppressants or biologic medication can entail other, possibly serious side effects. Weigh in all the pros and cons before starting any treatment.
How long does TSW last?
Things would be easier if you’d just had to endure those phases once and that’s it – you’re healed. Unfortunately, the skin goes through previously described stages several times. As time passes, the cycles become less frequent, shorter, and the skin recovers more efficiently, but there’s still no shortcut to full recovery. Generally speaking, TSW skin condition can last anywhere from 6-24 months depending on the person and the severity of their skin condition. However, since everyone’s body works differently, there might be exceptions.
It is important to remember that during this time your body is going through a very difficult process and it needs patience, care, and understanding. During this time you will need to take extra precautions with your skincare routine and nutrition and ensure you are doing everything possible to support your skin’s recovery. This can include avoiding triggers, taking time off from work or school if needed, eating a healthy diet, and using gentle skincare products. If you find that your condition is not improving or it becomes more severe in any way, make sure to consult with a specialist, be it a naturopath or a trustworthy doctor.
How to avoid Topical Steroid withdrawal?
The most obvious answer would be – don’t use topical steroids! If you are already using topical corticosteroids to treat eczema and not experiencing TSW, just beware of their serious potential side effects. Use these medicines only when absolutely necessary and follow your doctor’s instructions. Keep in mind that steroid creams aren’t a quick-fix solution to healthy skin. It’s crucial to identify the root cause of your skin problems, such as allergies or intolerances. If your skin is unhappy, it’s evident there’s something amiss with your overall health. Focus on solving the underlying issue for truly healthy skin.
Sources:
National Eczema Association:
https://nationaleczema.org/blog/tsw-need-to-know/
WebMD:
https://www.webmd.com/skin-problems-and-treatments/psoriasis/topical-steroid-cream-withdrawal
Hidradenitis Suppurativa:
https://www.hsconnect.org/post/biologics-vs-immunosuppressants
American Academy of Dermatology Association:
https://www.aad.org/public/diseases/a-z/jak-inhibitors
TSW Assist:
https://tswassist.com/topical-steroid-withdrawal-healing-stages/
Decoding Topical Steroid Withdrawal:
https://decodingtopicalsteroidwithdrawal.com/stages-of-skin-healing
The Business Research Company
https://www.thebusinessresearchcompany.com/report/corticosteroid-global-market-report
Scratch That
https://scratchthat.org.uk/information/the-science/
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