'How I overcame topical steroid withdrawal, and got my eczema under control'
Whether it's a red and itchy flare-up or patches of dry, sore skin, eczema can be a debilitating skin condition for the 15 million people who are estimated to have it in the UK.
A recent survey conducted by the National Eczema Society revealed that 89 per cent of adults with eczema said it had significantly reduced their quality of life. It also found that 75 percent of those surveyed had felt 'helpless', 'anxious', 'depressed', or 'socially isolated.'
A common treatment that's often recommended is topical steroids – creams, ointments, lotions or gels via which steroids are applied directly to your skin. 'These can help eczema and they are a very useful treatment to control flares when used properly and in combination with emollient moisturisers,' explains facial aesthetics doctor Dr Amiee Vyas, of online skin clinic, Get Harley.
Yet a condition that can arise with prolonged use is topical steroid withdrawal, also known as TSW. Here, symptoms include burning, weeping, flaking, shedding, peeling, spreading, swelling, redness, wrinkling, thin skin, pus-filled bumps, cracking, itching, nodules, pain, insomnia, hair loss, shivering, fatigue and depression.
Moreover, Dr Vyas adds that 'there is still a lack of research on TSW – so it is difficult to define exactly what the triggers are and how common the condition is. However, a systematic review of current findings in the Journal of the American Academy of Dermatology by the National Eczema Association has found that TSW is more common with prolonged use of daily topical steroids in more sensitive areas, without breaks and tapering doses. It is also more common in adult women who use moderate to high potency topical corticosteroids on the face and genital area.'
Only recently, The British Journal of Dermatology published the article ‘Topical steroid withdrawal syndrome: time to bridge the gap’, with contribution from the National Eczema Society.
As October is eczema awareness month, WH sheds some light on TSW, along with three women's journey on tackling the issue. Here's everything you need to know...
Firstly, what is eczema?
Atopic dermatitis (as it’s officially known) is a chronic inflammatory skin that is caused by an overactive immune system and abnormal skin barrier.
'Those who are prone to it experience recurrent flares of irritation, itching, and dryness. Patches of skin become very red in lighter skin types, or darker in skin of colour and in all cases eczema can be very sore with swelling and cracks in severe cases,' explains Dr Vyas.
Do steroids help eczema?
Topical steroids (or corticosteroids) are creams and ointments that work by reducing inflammation in the skin and therefore minimise symptoms of eczema.
'Treatment of eczema begins with the use of emollients (moisturisers) multiple times a day to rehydrate and soothe the skin, these are often also used for bathing as soap can further dry out and irritate the skin. Using emollients is important long term as they protect the skin barrier both between and during flares,' explains Dr Vyas.
'Topical steroids can help eczema and they are a very useful treatment to control flares when used properly and in combination with emollient moisturisers. In most cases, topical steroids are recommended to be used sparingly in short bursts or just a couple of times a week, rather than daily,' she adds.
However, Dr Mazin Al-Khafaji, master herbalist and authority of Chinese Medicine, adds, that while 'using topical steroids suppress inflammation and appears to improve eczema in the short term, they also have several other unwanted side effects.'
'For example, they stimulate an enzyme in the skin that converts the body’s own naturally produced steroid(known as cortisol) into an inactive form. That means that when the topical steroids are discontinued, the body's own ability to reduce inflammation is significantly reduced since the naturally produced cortisol is made ineffective, which in turn leads to what is known as a rebound effect where the eczema or psoriasis comes back with a vengeance. Like a forest fire, the more inflammation there is in the body the more inflammation is activated, so a chain reaction is set up that leads to increasing escalation of the condition.'
Are steroids bad for eczema?
Topical steroids come in different strengths from mild to very potent. The stronger they are, the more they can reduce inflammation, but continued use of high-strength steroids is more likely to result in side effects.
These include:
thinning of the skin and with long-term overuse
bruising, colour changes, especially if you have darker skin.
permanent stretch marks
broken capillaries
small, spidery veins on the skin
'Your doctor should advise you and prescribe the best option for your needs with the lowest risk of side effects. Initially, when topical steroids are used the skin can sting when applied, this usually improves as the skin gets used to treatment and moisturisers can be used to control this. Always speak to your doctor if stinging and irritation are intolerable or don’t resolve,' adds Dr Vyas.
Anything that causes more irritation or discomfort to the skin must always be stopped as it will worsen inflammation. This can make your eczema sorer but can also trigger other inflammatory skin issues like rosacea and acne, amongst others.
Doctors are adamant that following application instructions is key as they claim that using too little can result in long-term use and a prolonged flare because the inflammation is never properly controlled. However, this puts much of the blame on the patient when TSW does occur, leaving many feeling as though the TSW is their fault rather the result of the medicine in the first place.
Briana Banos, creator of the Preventable documentary, says that 'there desperately needs to be more empathy towards the patient experience. Most of us are going through this alone because doctors won't acknowledge this even exists, so to continue placing their prescription palette on a pedestal ostracises us further. This is usually a doctor driven issue, therefore it is them who needs awareness, not just the patient.'
How do I know if I have TSW?
If you are dealing with symptoms an have just stopped a topical steroid treatment, then TSW could be at the root of your issues. 'Topical steroid withdrawal is a possibility if you have recently stopped long-term treatment with a moderate or high strength steroid.
'TSW is more painful and severe than original eczema and the rash spreads. Your skin may be itchy, with acne-like bumps or weeping, peeling or shedding.
'In severe cases there can be hair loss, excessive sweating, shivering and in turn a hugely negative impact on your sleep and mental health. If you are concerned you may have TSW make sure you speak to your doctor,' explains Dr Vyas.
How long does topical steroid withdrawal last?
Withdrawal can develop within days to weeks after stopping treatment.
Dr Vyas says that 'it may be short-lived and settle quickly or continue for months on end or longer. It is characterised by a very red rash or darkened skin in skin of colour, and very painful burning or intense stinging.'
How do you treat topical steroid withdrawal?
'The patients I have seen for TSW have had a tough period of trial and error treatments by the time they have found me. My strategy for treating TSW is this:
Focus on strengthening the skin barrier and defence against environmental and infectious triggers.
I use gentle yet effective prescription and medical-grade ingredients to reduce inflammation, control symptoms and improve quality of life.
I take a collaborative approach to support any treatments received by the GP and offer regular reviews that include lifestyle guidance to support my patients throughout their journey.
Keeping treatment simple and using single products that combine ingredients that work synergistically together rather than layering multiple steps has been my key to management alongside personalised application regimes which are adapted according to my patients' responses.
While everyone recovers and responds to treatment at different rates, this approach helps my patients regain their confidence and get on back to feeling like themselves again,' reveals Dr Vyas.
Does eczema come back after steroid withdrawal?
'There is a lack of medical evidence on this so there is no definitive answer, however, it has been documented that eczema doesn’t return or is less severe once the topical steroid withdrawal period has ended,' adds Dr Vyas.
However, the National Eczema society states on their website that after stopping TS other problems may develop.
'Often the original condition comes back when the treatment stops – eczema is a long-term skin condition that comes and goes and this is a normal pattern. There is also a group of symptoms called topical steroid withdrawal (TSW) reactions, referred to by patients as ‘topical steroid withdrawal’, ‘topical steroid withdrawal syndrome’, ‘red skin syndrome’ or ‘topical steroid addiction’. These are severe reactions that can occur when moderate- or high-potency topical steroids are stopped after prolonged use, usually more than a year and usually to treat eczema.'
'Patients experience symptoms worse than their original condition. They suffer red or darker burning skin (darker than their usual skin tone, depending on skin colour) often in areas where they never had eczema before. They can feel tired and weak and may even be bed-bound. Dermatologists would call this erythroderma or erythrodermic eczema. It appears that the eczema has bounced back worse than before, perhaps because the skin has been altered in some way by the topical steroid. The condition can continue for months or years. Prolonged use of potent and very potent TS may even suppress the body’s own normal steroid production. This is called hypoadrenalism and causes severe weakness and low blood pressure.'
'I realised that much of my struggles over the years hadn’t actually been eczema, but the side effects of topical steroid addiction'
Chloe Carter, 27, a Technology Consulting Manager from Liverpool, shares her journey of TSW – and she overcame it
'I didn’t ever really have eczema as a child, just food allergies. When I was 17, I suffered a skin allergy reaction on my arms and was prescribed steroid cream to combat it.
The steroids generally helped initially, but I found that as soon as I stopped using them, the problem returned even worse, and I soon had eczema on my face, decolletage, arms and torso, leading to being prescribed even stronger steroid creams to manage it.
This vicious cycle became my life for 8-9 years: complete steroid and moisture dependency, anxiety, fear of looking people in the eye and a severe lack of body confidence.
I knew I needed to get away from steroids when I began to see the term ‘topical steroid withdrawal’ mentioned, and when I saw photos of what people going through it looked like, I realised that much of my struggles over the years hadn’t actually been eczema, but the side effects of topical steroid addiction.
I took myself off steroid creams when I was 24 and actually managed to keep the side effects ‘at bay,’ but I was completely moisture-addicted. I was in a serious cycling accident in July 2020 which resulted in extensive facial and dental injuries, and during my recovery, I turned to steroids for a few days to try and help some of the "eczema" I’d developed during that time.
A couple of weeks later, I was left trying to battle both recovery and topical steroid withdrawal. I had skin worse than ever before, my body felt like there were thousands of bugs crawling all over me constantly, I couldn’t regulate my body temperature, couldn’t sleep, I had horrific anxiety I and was becoming intolerant to just about everything I ate and used - just to call out a few side effects.
I was off work at the time and immersed myself in how to "fix" myself. There are numerous Instagram accounts of people going through withdrawal and their methods [including specific diets] it works for some – but, for me, it was too easy to become obsessive. I had so much empathy, though, for the other people all over the world going through the same horror as me.
No moisture treatment (NMT) really didn’t work for me, and I had no real medical knowledge about how to deal with it properly. I was afraid of going back to my GP who would most likely try to offer me steroid creams again.
It was then that I came across Dr Amiee Vyas at GetHarley. I booked in for a virtual consultation where Amiee listened to my skin journey and recommended a skin regime for me. I’d never really had a skin regime before, just a tonne of moisturiser, so this was a positive step.
I was able to contact GetHarley via Whatsapp whenever I needed advice or if things weren’t working for me, and Dr Amiee would advise me when to step back on certain products or switch things up.
I was told it would take 12 weeks to repair my damaged skin barrier - something that challenged me as I was someone who loved a quick fix - and you know what, with time, it worked. Amiee also recommended how to manage other areas of my lifestyle beyond the products, stepping back on ‘sweaty exercise’ whilst my skin was struggling, and I’ve also introduced acupuncture every 1-2 weeks which has really helped.
My skin isn’t perfect 24/7,- but I can’t believe the transformation from the place I was in this time last year.
I love my AM/PM skincare routine, being able to enjoy makeup without fear and to feel confident again (which says something when I’m more confident now even with my accident injuries, including temporary dentures in place of 13 missing teeth, than I was pre-accident in the depths of steroid use and moisture addiction).
The Maxillofacial surgeon I’m working with for my reconstruction surgery also noted huge improvement between January and September despite having no further surgery in that time, which is a testament to how the body can heal itself with the right products.
I continue to keep in touch with GetHarley to refine my regime and top up my go-to products. It’s a process and investment for me that has become integral to my life and one that I’ll continue with for the long run. Steroids are absolutely a thing of the past and I can’t wait to see my skin and health continue to go from strength to strength.'
Chloe's skincare routine for dealing with TSW
'TSW is not just a physical condition; it's a multifaceted challenge that permeates every aspect of life, demanding immense strength, understanding, and support to navigate its complexities.'
Karishma Leckraz, 30, a content creator from the South East London reveals how finding a skincare routine has involved lots of trial and error.
'I was diagnosed with atopic dermatitis at 2 years old and was given topical steroids at a very young age, way before I turned double digits, to “help” reduce and relieve the symptoms of Eczema. I’d been using topical steroid for 10+ years and was given a various number of strengths that ranged from mild to high potency.
Once I got past the stage of denial and realised that TSW was what I was going through, I decided to just go cold turkey there and then. I also didn’t do it the guidance of medical professionals because at this stage I had lost all hope in them. If it wasn’t for the community online posting about TSW I may have carried on steroids them till this day.
TSW invades every surface of life. I vividly remember the days when my skin was at its worst. That ceaseless itch felt like it had penetrated my bones, setting off a draining cycle. The constant battle against the urge to scratch left me utterly exhausted. The itch transformed my skin into patches that flaked, peeled, and sometimes even oozed and bled, introducing a whole new level of discomfort.
On the most dreadful days, my body was so inflamed that I couldn't even see clearly, eat properly, or walk without pain. Sleep, a crucial element for well-being, often becomes fragmented or elusive due to the incessant itching and discomfort.
Emotionally, I hit rock bottom. It felt like there was no way out, no flicker of hope on the horizon, and a persistent fear that perhaps I was fighting this battle alone. Seeing the physical evidence of my struggle every day only intensified the emotional turmoil.
Additionally, TSW can put a strain on work and financial stability. Prolonged discomfort might lead to decreased productivity or even time off work, impacting one's professional life and financial security. This, in turn, creates a cycle of stress, further exacerbating the emotional toll. It was akin to being trapped in a ball pit, desperately trying to climb out but also tempted to surrender and let the pit consume me entirely.
As for the treatment process itself, it often involves trial and error with different skincare routines and medications. Adjusting to new treatments while managing the physical and emotional challenges of TSW requires resilience and patience. Now I stick to a super gentle skincare routine and
I opt for mild, fragrance-free products to avoid any irritation. It's like giving my skin a break, protecting it from anything that might make it worse. Hydration is key too. I make sure to moisturise regularly with products specifically made for sensitive skin. They act like a shield, keeping my skin moist and helping it heal. I'm also careful about avoiding things that irritate my skin. I stay away from harsh detergents and fabrics that could aggravate my symptoms.
Creating a space that's free from potential triggers has been a game changer. What I eat plays a role too. I've noticed certain foods can make inflammation worse, while others can help calm it down. So, I load up on foods rich in antioxidants, omega-3s, and vitamins. They boost my immune system and help my body cope better with TSW. Lastly, stress is a huge trigger for me. Finding ways to relax, like through meditation, yoga, or just deep breathing, has made a real difference. Less stress often means fewer flare-ups. So, it's all about finding my zen amidst the chaos of TSW.
Mental and emotional support is also crucial. Talking to people in support groups, going for therapy, and connecting with healthcare professionals really helps me deal with the emotional side of things. Plus, reminding myself to be patient and kind to myself is super important during this tough time. It's all about taking it one step at a time and being gentle with myself as I navigate through these challenges.
To anyone going through it, remember, be patient with yourself, there is a light at the end of the tunnel. TSW can be healed, and you're stronger than you think. You've absolutely got this, you are valued, and you are valid. Stay strong!
'I think many people are under the impression that the withdrawal process is a voluntary thing. For me, my body was showcasing very different symptoms to mere eczema. '
Briana Banos, 34, Full-time MA Film Directing student and creator of the Preventable documentary, Scotland.
When I began looking into my declining health, it was in December of 2014. Back then, it was nearly impossible to find a doctor or dermatologist who knew the terms Red Skin Syndrome or Topical Steroid Withdrawal. It was seen as merely “severe eczema” or “untreated eczema”. Every time I tried to give my body a break from using a topical steroid, it would immediately get worse. It became apparent that the topical steroid, not my eczema, was the culprit in making me ill.
TSW came on like a dam bursting. My body reacted immediately to me ceasing the drug. The rash spread all over my body within one month; my eyes were swollen; my body was oozing out fluid that stuck to my clothes and my pillow; I was unable to regulate my body temperature; I was itchy and had horrible sleep; I shed profusely and had blurry vision; everything triggered me, and my hair began to fall out.
I found doctors unhelpful. The dermatologist I saw wouldn’t even acknowledge TSW existed. I brought in literature (which they never looked at), which is disheartening and creates distrust in the room. They offered me an immunosuppressant for my “severe eczema” (I’d already failed one immunosuppressant prior – it did nothing for me except burden my kidneys) and also more steroids, including a steroid shot. I left with nothing other than the fact I’d have to go without a specialist by my side.
The only person that was compassionate was my general practitioner. She would just run tests to help check my bloods and if there was anything happening internally that could be making me worse.
Even now in the US, with the new drugs present, many dermatologists will still offer more potent steroids to someone clearly exhibiting withdrawal symptoms. Now, I am on dupilumab (a biologic drug that targets certain inflammatory pathways in the body), but I still have patches of eczema that come up in the creases of my arms, my face, and my neck. I also began incorporating dead sea salt again only a year ago when a bathtub was available to me (from around year 5-8, I did not have a bath). Now, my new flat has a bath, so I use westlab bath salts about 3 times a week when I soak.
My top three things for advice would be:
1/ Don’t compare your journey to anyone else’s. We are all different and what may work for someone may not work for you. Don’t set an expectation of healing. The process is not linear and is highly volatile in parts. When you set an expectation, it feels like a goal – but it isn’t. A goal is usually under your control (ex: wanting to shed five pounds in two months), while your healing (physically) is not always 100% in your hands. How you respond is in your power, though.
2/ Mindset is key. So don’t set an expectation. It can lead to unnecessary anxiety. Take it day by day. Remember: You are doing your best! And however little it may feel, it is enough.
3/ Don’t live by what you think others want you to do. There can be a lot of pressure in the community to “heal naturally”, which can lead to immense suffering in some who are severe, have families to take care of, or who are mentally at their wits end. If you want to try a pharmaceutical drug, go for it. If you want to try a naturopath, go for it. As long as you’ve weighed the pros and cons for yourself and have taken the time to process your decision, it is yours and yours alone. No one lives your life – do what is best for you.
You Might Also Like
