Balmonds is very proud to host a guest blog from Louise King, who has charted her TSW journey on Instagram as @louigi.skin. Here she writes about her new strategy for healing from topical steroids.
My name is Louise, I’m 28 years old and I have been going through something called topical steroid withdrawal since Christmas 2018.
What is TSW?
Topical steroid withdrawal (also known as TSW, RSS or Red Skin Syndrome) is a condition caused by using prescribed topical corticosteroids, usually over a long period of time for skin conditions such as eczema or dermatitis, although sadly some people suffer withdrawal symptoms after only a few months of use.
This debilitating condition is not recognised in many parts of the world, including the UK where I live. I was never warned of the potential side effects of topical corticosteroids and used a variety of different steroids on my face and body for 23 years, after first being prescribed them as a child aged five.
My history with steroids
I noticed my skin deteriorating year on year while using the creams, requiring stronger potencies each time. It wasn’t until I saw a hashtag on Instagram that I realised my skin’s regression was being caused by the very medicine I’d been using to treat it.
I decided to go cold turkey from steroids earlier this year, and, unfortunately, was hit with very severe withdrawal symptoms, leaving me bedridden for months and unable to start my new job in the new year. Going cold turkey from steroid creams is the most successful way to withdraw, but I wasn’t prepared for how seriously poorly I would become.
I aimed to heal from TSW naturally using a variety of methods such as ‘moisturiser withdrawal’, cryotherapy and changing my diet, while bearing in mind that time would be the ultimate healer. I did manage to see gradual improvements over a period of six months, the hardest months of my life, but my face was still very badly affected. After months of pain, discomfort and embarrassment, my mental health deteriorated to the point where I was suicidal.
A new strategy
Finally I decided enough was enough and changed my original plan; I needed to take immunosuppressants to aid my recovery. This decision was particularly difficult for me, and coping with the very sudden improvements which accompanied the use of the new drugs has been interesting, both physically and mentally!
I want share my diary entries after taking the immunosuppressants with you, so you can get an insight into my recovery, and the reflections I’ve had on my difficult, yet life-affirming, journey so far.
I chose for this blog to be posted on Balmonds website as their Skin Salvation balm was the only moisturiser I could successfully use on my burning TSW skin without stinging or irritation.
DIARY ENTRY: 4.14 am, Saturday 13th July
5 days on Cyclosporin, 6.5 months TSW
It’s been a while since I’ve been able to put pen to paper (or finger to keypad). Everything you will have read by me so far will have been written in the early hours, and tonight is no exception. It’s 4.14am and I’m wide awake. My mind is buzzing at the same velocity of the fan above my head. Round and round go my thoughts while I attempt to process the last six months.
I knew this would happen - I anticipated it. Any break or recovery from TSW (be that natural or medicated) is, I’m told, a total head fuck. I remember Cara Ward (TSW survivor) explaining that she beat TSW in two years but it took her another two to process the mental trauma. Well for me, I went from very poorly to better in a week! Though, thanks to modern science – ahem, *not steroids*. I’m in total headfuckery mode and it only seems fair to jot some words down for my own mental well-being, and in the hope that someone else in a similar situation might be reassured by them one day.
As I reposition my head on the pillow I’m greeted with that all too familiar feeling of dried ooze ripping my skin from it. I shudder, how disgusting! When I examine my face with my finger, I realise there is only a pea-sized patch of moist skin. I’m struck both by ‘phew!’ and ‘Jesus Lou, why are you moaning about this - look at what you have survived!’
Any kind of recovery brings mixed emotions on reflection. This reflection is necessary to process trauma nestled deep within, otherwise it’ll just bite you in the ass later on.
However, I didn’t expect to have lost so much memory of those early days.
In the dark beginnings of my TSW condition, I didn’t think much. I was blinkered. Just making it through each day the best I could. It seems the better you get from this crippling illness, as you see old parts of your life creep back, you get to reflect on each time you feel like you again.
For example, I walked four miles tonight and it reminded me of the times my parents had to move me from the bath to my bed when I was immobile. During the walk, I gazed at the beautiful sunset and imagined how many of them I had missed this year. I looked down at my freshly pedicured feet in flipflops and I felt like a princess - or at least just a woman again. But most importantly, as I giggled and swung from the swings like a teenager, I took a moment appreciate not being in severe pain & discomfort anymore. Not wanting to end my life anymore. In a way, I felt reborn.
I’ll never look at life the same way.
DIARY ENTRY: 22.10 16th July 2019 - earlier than usual!
1 week on Cyclosporin, 6.5 months TSW
When I made the difficult decision to take immunosuppressants I did it with the expectation that they would work right away. I expected to wake up a few days later and have perfect skin. This certainly isn’t the case for more than a select few; generally it takes between two to six weeks for full skin recovery. So, you go from one very slow natural healing process to a faster (but still tediously slow) medicated healing process.
Even though those around me keep telling me how much better I look, I just can’t see it. If it’s not perfect then it’s not any better. I’m unbelievably impatient at this point. I can’t believe I lasted six months with extreme patience but these days it’s wearing thin. Thinner than my steroid-damaged skin.
I should probably explain that immunosuppressants are a highly potent drug. They were firstly created for organ transplant patients to stop the immune system rejecting a new organ, but in the 80s they were cultivated by dermatologists for use in skin disorders such as psoriasis & eczema. For skin, scarily, they do what they say on the tin: they suppress your over-active immune system. This is a terrible prospect, and it was a decision I agonised over for three months. Every single day. It took six months of hellish TSW before I caved in.
As I’ve said before I was desperate to heal from Topical Steroid Withdrawal naturally, but after suffering severely on my face for months on end, I just couldn’t take it anymore. I had become majorly depressed, to the point where I was planning my own suicide.
Using immunosuppressants such as Cyclosporin, Methotrexate, and newby Dupixent for getting through TSW is a difficult and often heated topic. Many people in the TSW community believe you can’t heal from TSW without the pain. In other words, suppressing the immune system response means suppressing the repair. I spent months looking into it and it wasn’t until I read many testimonials of people that had achieved healing this way that I realised it might be an option for me too. It’s not ideal, of course: healing naturally is the main goal, because why would you want to take more medication after what we have been through as a result of taking prescribed medication?!
But sometimes medication is needed as a last resort, to save a life from deep depression or to enable someone to be well enough to work again and provide for themselves.
One thing is for sure, TSW is utterly brutal and I’ll never judge anyone again for the choices they make on this journey, as long as it’s right for them at the time. It took for me to pretty much have a nervous breakdown to realise this. These meds will save my life, and for that I’m grateful. But I’m also acutely aware of how dangerous they are. Would I recommend them? Tricky question… I would say push your limits as much as you can to heal naturally with TSW. And, then, when you can’t go on any longer, keep going.
But if your mental health is suffering severely, I think there’s no shame in looking at other options, provided you do a fuckload of research and weigh up the pros and cons - the cons of course being any dodgy side effects of these toxic drugs!
I’ll discuss those next time as (touch wood) I haven’t endured any yet. I’m off for blood tests in the morning to check everything is okay and then again next week. It’s a shame steroid creams weren’t so highly regulated or maybe we all wouldn’t be in this pickle in the first place! :)
DIARY ENTRY: 4.51am 16th July 2019 – later that same evening
1 week on Cyclosporin, 6.5 months TSW
What’s sleep anyway?!
In reflective mood tonight, I wondered if I wished TSW had never happened to me. I think it happened at a shit time, but I’m not sure I would take it all back now. Of course, I envy people with perfect, disorder-free skin, but I’m not sure I realise even now how much the experience of TSW will shape me. One thing’s for sure, the pouty selfie girl inside of me died last year and someone else was born. Someone who now knows she’s tougher than she thought and now realises beauty is truly skin deep. I’ve connected with people all over the world online and met so many new people in the fresh, I wouldn’t take that back. Maybe I need to be fully healed before I can fully appreciate how much this life changing year has in-fact changed my life ...for the better! x
DIARY ENTRY: 00.19am 19th July
8 days on Cyclosporin, 6.5 months TSW
Mum and B sat with me tonight and reminded me of how poorly I was earlier this year. The water bottles, the bandages, the pain, etc.
I walked another five miles tonight.
My old wounds are finally getting a chance to heal and I’m starting to recognise myself in the mirror.
I’m itchy as hell but it’s been euphoric to enjoy little moments again. Tonight, was the first time in a long time I didn’t notice any tightness or discomfort in my face. After nearly seven months of the exact opposite, I’m really enjoying the break!
Balmonds offer information and support, whether you’re going through topical steroid withdrawal, looking for safe long-term management strategies or wondering whether your symptoms match the condition.
For more information about TSW, its symptoms and how to manage them, go to the ITSAN website.
Other hashtags to follow for peer-to-peer support: #thisisnoteczema #tsw #TSWFab5
Current medical advice is not to use daily topical steroids continuously for more than two to four weeks; then the frequency should be tapered to twice weekly use.
Louise charts her TSW journey on Instagram @louigi.skin