This post has been my primary reason for wanting to start a blog: I'd like to share a hopeful story for everyone who is currently going through topical steroid withdrawal. By the end of 2020 I learnt about TSW and decided to give up steroid cream. I was terrified that it was going to be a long and debilitating process, and while it wasn't easy, one month in I was already over the worst part. It's now been six months and have been symptom free for over three months. In fact, my skin has never been better!
It took me a while to get around to writing this, though. The post outline has been sitting there for 5 months. I'm still unsure about sharing such a deeply personal experience, including pictures, with the world. I'm driven by the fact that TSW is such a difficult thing to go through on your own, and other people's stories have been immensely helpful to me. Something I would have loved to see more of is daily accounts of the healing processes people go through, so I'd know better what to expect. I decided to follow the advice to ‘write the article you wish you found when you googled something’ — so that's exactly what I'll be describing below. Additionally, I've created a members-only space where I'll be sharing unfiltered, in-depth stories about the ups and downs that come with TSW, healing, and life. If you're interested in reading more, just sign up and the posts will arrive to your inbox whenever I write something new.
As for many people, 2020 was a difficult year. I moved from Barcelona to Amsterdam, went through a breakup and started a new job, all of which happened in the midst of a pandemic. I’ve suffered from atopic dermatitis for most of my life, and the severity of my eczema has always been a good indicator of my emotional stress levels. Unsurprisingly, this year had been particularly bad.
A dermatologist prescribed me a steroid cream (Cutivate cream 0,5mg/g fluticasone propionate) about 10 years ago, which I'd been using on and off. He warned me to not use it for more than 3 days consecutively, after which to take a 4 day break — advice I generally stuck with.
In December, I wondered why my skin wasn't getting better as my life slowly started to get back on track. The opposite was happening: as soon as I'd stop using topical steroid cream, it would flare up within the next two days. I was also experiencing a weird zinging feeling at random times, like an electric shock going through my face — although I didn't realise this was connected.
While browsing eczema forums online, I read about topical steroid withdrawal for the first time. I intuitively knew this could be a major clue as to what was going on. The more I read, the more I realised my symptoms where an exact match with TSW. I read every single piece of information I could find and knew it was going to be a long ride. I decided to quit the steroid cream cold turkey there and then (it was the end of December), and enter the new year in withdrawal. I was afraid and didn't know what to expect — I'd read many accounts of people for whom recovery took months to years, accompanied with some very distressing photos. I wanted to be the most healthy version of myself, in order to heal as quickly as I could — more on that in future posts.
Without people sharing their stories I would've still been trying to figure out what was going on. And so although posting these photos is uncomfortable to me, here's a day-by-day account of my progress, which will hopefully help some prepare for what's to come.
The first week
While quitting the cream on the 30th, I decided to start the new year with a strict regime I had planned for myself — which I'll break down in future posts. I'd never been more motivated for my "New Year's resolutions". I spent New Year's Eve having dinner with a small group of friends as we were still in lockdown — one last time to enjoy lots of food and some drinks!
As expected, the morning after I felt a flare coming up. I set out to take photos every day. Initially I was fascinated (slightly obsessed) with what was happening to my skin, but after a while I became less consistent with documenting my progress.
The morning of the 2nd, I could see my skin becoming agitated. My eyes were inexplicably swollen when I woke up — this continued for about three weeks. I mainly suffered from eczema on my face and neck, so these were naturally the problem areas during TSW as well. I've heard stories of the symptoms spreading but luckily this hasn't happened to me.
Throughout the day, the redness started to spread. By far the worst part of it all was the constant burning sensation — it felt like my face was on fire. The symptoms were slowly spreading to my neck as well. I couldn't bear any fabric other than cotton anywhere near my affected skin, so although it was freezing cold, my woolen jumpers and scarfs stayed in my closet. Make sure you have comfortable, loose clothes to wear.
I took a shower the next morning, and right after was probably the worst it had ever been. I couldn't handle the pain and decided in that moment to make sure my face wouldn't get wet during showers at all until healed. I stuck with this for about two months and I think it's helped a lot. I still don't wash my face with anything other than water — I've never worn much make-up and with a healthy skin barrier, water is all it needs.
My face was burning, red and swollen. Luckily it was very cold outside so I went for walks and runs regularly as this was the only thing offering some relief from the pain. At the same time, going outside caused me additional stress due to the way I looked. I needed to stop worrying about what people were thinking, which was mentally challenging and took me a few days — but my drive to go outside and exercise was stronger than my fear of facing other people. Although sweat can aggravate eczema, I also read that sweating detoxes your skin and thus accelerates the process. I ran between 5-10km most days and definitely feel like it helped.
On the topic of other people — I recommend sharing what you're going through with the people in your surroundings. Not only will they be able to support you but it takes away some of the unnecessary stress of facing them and worrying what they might think. I was in a privileged position because I started a remote job 6 months prior so didn't have to come into the office — yet I still told my closest colleagues because I wasn't 100% focused on work. To my surprise, two of them had experienced TSW as well!
Another day in, I still looked puffy and noticed I started to lose some hair around the temples where I had patches as well. Thankfully, this was only temporary and about two months later, my hair was growing back to usual.
In less than what seemed like a very long week, my skin was a bit more calm and the burning sensation became a little more bearable. Clearer patches started to form on my face, head and neck. This is where I got into the habit of splashing my face with water mixed with dead sea salt (and later Epsom salt) after getting out of the shower, and then dipping my face dry. Although the salt increases the burning temporarily, it calmed and dried out my skin which helped speed up the process. It also relieved some of the itchiness which was getting worse at this point. I tried diluted apple cider vinegar on my face once — which was hell — and only aggravated things.
Gradually the flare was calming down and my skin started to peel, initially around my lips. I started to feel more itchy and was wearing cotton self-made gloves at night (socks work too!) to avoid subconscious scratching.
My skin flared up again while crusts started to form, especially on my forehead. These were oozing at this point, though not as much as I'd heard from some people. It is recommended not to touch it, which is what I tried. I did continue splashing my face with dead sea salt multiple times a day, to dry out the skin.
The second week
One week into the new year is where I started to moult like a lizard. Again, the challenge here really was not to touch, or worse, peel it. Luckily as eczema sufferers we are trained at resisting the urge to scratch!
The 8th is where I was feeling good for the first time in a while. Although my face was still covered in red patches, the general complexion of my skin had improved. My face and eyes also looked less puffy overall. Taking pictures helped me notice the minor progressions and keep up morale.
After shedding a lot of skin, my face flared up again — but much less intense then the first time.
The third week
The third week in, I was doing well! I noticed a pattern: flare up (swelling and burning), slowly transitioning into crusts forming (oozing) and into moulting (itching). This would then repeat itself, but each time with much less intensity.
The last week
The last week of the first month involved more, but lighter shedding — some days worse than others. I even wore a jumper containing wool for the first time! As you can see in the picture, my lips were more agitated than the rest of my face.
Exactly one month in, I was feeling great! Although I could still see that my complexion was not how it's supposed to be and the itchiness hadn't completely disappeared yet, I was already doing better than before I quit the steroid cream — much quicker than I could have hoped for.
I had read accounts of symptoms disappearing only to come back again when you don't expect it. Knowing this, I didn't want to assume it would all be downhill from here — however, I was quite positive this wasn't the case for me. This is because my healing process followed a clear pattern of flares coming and going, each one less severe than the one before. And thankfully, 6 months later I can indeed say that it's only been getting better from there. The eczema itself (or so I thought it was?) has even disappeared — which means my skin hasn't been this good for this long in forever.
I am aware each process is different in intensity and duration, and for some it's going to be a shorter process than others. To some degree, TSW is something you just have to ride out. But I am convinced that with the right habits (skin care, diet, sleep, exercise, supplements, mental health, etc.) you can create optimal conditions to help your body heal faster. It involves trial and error, which is why I'd like to share some of my experiences in upcoming posts — stay tuned.