Before the Storm

“Stop scratching!” If I had a dollar for every time someone said that to me over my 31 years of living, I would be writing this blog from my privately owned over water bungalow in the Maldives while sipping a gold flaked martini and looking out at my 400 foot yacht…….Ok you get it, I would be filthy rich because I scratch a lot! Why do I scratch? Because I've lived with eczema for as long as I can remember, and up until recently I thought I was in control of it. Little did I know that my life with eczema was being made worse by the topical ointments prescribed to me to control it.

Since May 2019 I have gone through something called 'Topical Steroid Withdrawal'. When you think of the word withdrawal, you usually associate it with a drug or substance. But did you know you can experience an addiction and then a withdrawal from a topical steroid ointment used for eczema? I certainly didn’t, but unfortunately I do now!

Dealing with a skin condition can be extremely tough, and not many people understand just how much it can affect all aspects of your life. I guess to tell my story I have to go back to the beginning and share with you how I got to where I am now.

My parents tell me I was born with really bad cradle cap and then slowly developed body eczema. Growing up it was in the typical eczema places, the folds of my arms and legs. It would get worse when I would sweat, overheat or wear certain fabrics. It never stopped me from being a kid though and participating in sport, going on sleepovers and school camps, not until high school anyway. I also had asthma, which tends to go hand in hand with eczema. What was the treatment growing up in the early 90’s for eczema? Not a whole lot. The awareness of food, allergies and environmental triggers weren’t as well known as they are now, so the only advice my parents could follow was from our doctors. Standard treatment in the medical industry for eczema was and still is steroids (mostly topical ointments and sometimes oral steroids). Apply to affected areas twice a day as directed by your doctor is what the prescription would say. No warnings or advice that this potent ointment should only be used for a short period of time as I have since learnt.

My eczema would come and go over the years, and I would apply the creams as prescribed thinking nothing of it, on and off for years. Thankfully at around the age of 12/13 my mum starting looking for other solutions and we discovered natural therapies. It was here we learnt the importance of food and skin problems so we started removing known triggers that would cause flare ups and we saw a lot of improvement. I wasn’t as reliant on the topical creams and I don't remember having to continually use them. But my eczema would still return, on and off over the years and we never truly ever got to the bottom of it, no matter how squeaky clean my diet was or how much I worked on my health. We saw a lot of practitioners, spent A LOT of money and had every possible test done. I also went on a lot of restrictive diets, which when you are a kid is hard work for everyone involved! I also had your typical eczema allergies - dust mites, grass, pet hair etc. Along with the usual food culprits - gluten, dairy, sugar, salicylates.

At age 16, my skin flared so bad my Dr put me on oral steroid tablets to get me through exams and peak netball season where I would often play 4 day tournaments, train and play multiple times a week. This was my first time taking oral steroids, I didn’t exactly know what they were or what they did but it was like a magic pill! Two days in I had the clearest, most silky smooth skin I have ever had in my life. People would comment I was glowing! At last a miracle cure…..well that was until you finished the 10 day course of tablets. The very first day I stopped taking the tablets, my skin rebelled! Rashes were popping up everywhere and in places I never even had eczema before. How strange, must just be some weird reaction I thought. Then two years later, another bad flare came and the Dr said the only way to settle your system will be with a round of oral steroids. Naively, I took the course of tablets again. And the same thing happened! Safe to say I never touched oral steroids again. At the time, I never thought to even research what was happening, I just thought it was my body having a reaction to the tablets. Back to the drawing board and using the topical creams when needed.

A few years later, I experienced the worst skin I had ever had. I had recently broken up with a boyfriend and was devastated. Without even consciously realising, I had stopped using my creams (because you know - super dramatic heart break, not showering and leaving my room for days). I had head to toe rashes, swollen infected eyes and I looked like something from a horror movie. Must just be from stress! Stress plays a part in eczema, but holy hell can it do this? It was brutal to say the least.

Can you see the pattern forming here? Use creams, have good skin – don’t use creams, eczema would return. Take oral tablets, have good skin – stop taking tablets, have super bad skin. Never once did I think there was something happening here….an addiction and rebound pattern was forming and I had no clue. I was told I would just need to be on steroids for the rest of my life, its just an unfortunate part of having a skin disorder – live with it!

After truly exhausting every avenue, I finally went to a dermatologist for the first time. We thought we may as well tick that off the list as we have never been before, maybe they can cure and tell me more about eczema? Skin is what their speciality is after all. I had heard they only prescribe creams and there is no point, but I had to at least try. 15 minutes and $300 later, I walked out with a hydrocortisone cream for my face and another topical steroid ointment called diprosone for my body. I was told to use both twice a day on going, and that my GP can now give me these scripts because they have been approved by him. I can remember that consult so clearly, I was only 20 but I remember wanting answers after years of putting up with shitty skin. I asked this experienced dermatologist what the cause of eczema was? It has to be coming from the inside doesn’t it? Eating well helps but there’s still something missing, can you tell me more? Is it hormonal? Is it my gut? He literally said something along these lines, “we are not focused on worrying on the why we just need to control the surface and the flare that is happening”. I could not believe it, is that what $300 of expertise gets you? What a joke! Maybe it was from my years of seeing natural health practitioners, but if the outside isn’t happy surely it has to be coming from the inside or there is something gentically going on that my body can't cope with allergens. I left feeling so disheartened, if a skin specialist can’t even tell me what’s going on with my skin what hope do I have? I used the face cortisone he prescribed me for a few months, possibly for a year I can’t really remember, but I remember stopping it as it eventually started to tingle/burn and make my face hot and red, and it was making my mouth rash worse. Must just be another weird reaction, on with life I go. I consistently used the body cortisone, on and off again for the next 10 years, thinking nothing of it and that I would just need to use it when needed for the rest of my life. Not once did the dermatoglist or my Dr at the time tell me that steroids should only be used for short bursts of times and no longer than 3 months which I have since learnt. I naively followed their care plan without doing my own research. I also did not realise the strength of these creams that were prescribed were so much more potent then what my regular GP was giving me.

The next 10 years were some of my best skin years. I did a lot of gut and internal work, and my diet remained fairly clean and healthy. Maybe I grew out of it I thought? Must be the nutrition finally paying off! Friends and family would comment on how great my skin was and I too agreed that yes I no longer had skin problems. In fact, if you saw me and didn't know me you would never even know I had a history of eczema. I now know that this was just the strong steroids working in all their glory, masking everything. Sure my diet and lifestyle definitely contributed but I never really knew just how much the steroids were keeping things at bay.

I can’t even begin to tell you what it’s like living with a skin issue, especially in high school when looks become everything and boys enter your awareness. I can remember calling my mum a lot during school pretending to be sick but in reality I was having a bad skin day and was so self conscious I just wanted to come home and hide. I was shy with boys, hated people looking at me up close, was mindful of what I wore because patches of bad skin would be on display and I even delayed having my first kiss until year 10 because I always had this pesky mouth rash and inflamed lips!

Although to the outside eye in recent years I looked normal and granted I often felt normal, there was still a part of me that knew deep down, the skin issues were still there somewhere on some level. I would still get the occasional patches of bad skin pop up, to which I would just use the cream to clear up. I often lived in fear of my skin going bad again, in fact it actually ruled my life the majority of the time (well it still does). I wake up and the first thing I do is check my whole body in the mirror to see if it is clear or if there are any new rashes. Social events often give me anxiety because I always worry how my skin will be. I've been in quite a few weddings as a bridesmaid over the years as well as my own wedding, and this took the skin anxiety to a whole new level. I often would apply the creams at the first sight of any redness or bumps, almost like a preventative. Something I now regret because it ultimately led to me over using and absorbing more poison than I needed to.

Over the last two years, things slowly started to change with my skin. It was becoming thin and I would bleed easily when cut. I had nurses comment when I was getting blood taken and they often asked if I used cortisone because my skin was so transparent. Is that a side effect? No one told me! I also had issues with sun exposure on holidays, whenever I would have the slightest tan I would go blotchy and get really pigmented skin, often looking like a leopard. I would get really big cystic pimples (sometimes boils on my body too) and then the year I was getting married I developed full on adult acne across my forehead, something new to me but I thought it was just the stress of the wedding (I have since learnt acne is a side effect of steroid use). I then started to notice that if I wasn’t using my steroid ointment every 3-4 days my eczema would flare, in places I wasn’t ever using the cream. I would get puffy eyes and the rashes would start to creep in, in places I didn't normally have eczema. There were times where I would only need to use the ointment once or twice a week but lately I was having to increase it. Each time this would happen I would think it was my gut, and that something must be out of balance again. So I cleaned up my diet and took some supplements and did another cleanse thinking that my body was just having an eczema moment again. I tried stopping the steroids about 10 times because I thought I no longer had eczema and my health was pretty good, but the same thing kept happening each time no matter how many cleanses or supplements I would take. At this point I realised something wasn't right.I tried to google but couldn't find anything. I was searching for the wrong things though, I had been calling it cortisone dependency as I had always thought my creams were called cortisone. I did not know they were called topical steroids and that "Topical Steroid Withdrawal" was a thing and there was a very real condition out there.

Once I was married and the idea of starting a family came into the picture, I started to really think about what I was putting in and on my body. I live a fairly natural low tox life and the only unnatural thing left that I was putting in or on my body was the steroid cream. The steroid cream also says "do not use during pregnancy" on the label so I knew deep down that I was always going to have to give it up.

The year my partner and I started thinking about trying for a baby I started preparing my body with our naturopath and getting routine bloods done to see where we were at with everything. Now I know a lot of people don't believe in things like the "universe" or "energy" but I can remember sitting with my naturopath talking about baby prep and I said to her that I need to stop the steroids before I have a baby. As I've mentioned above, I had toyed with this idea before but never fully commited or openly had the intention, but this time I was serious because I really wanted to start a family. Within a few months, the universe responded very loudly to my intention of stopping the steroids. I developed 'Peri-Oral Dermatitis' which is an angry, itchy, bumpy rash that presents itself around the mouth, nose and chin. This was different to the rashes I had ever experienced before (but looking back - I think this was the rash that was coming and going throughout my childhood and teens but never to this extent). One quick google of my symptoms and I found pictures that matched exactly how I looked. Off I went to my Doctor who took one look at me and said...yep that's Peri-Oral Dermatitis. Are you ready for the punch line? Peri-Oral Dermatitis can be caused from using topical steroid ointments!!!! Can we just stop for a minute and process this.....I was using creams to stop other rashes and yet now this same cream also had the ability to create new rashes! I had never heard of Peri-Oral Dermatitis before. The only way to stop it from spreading and coming back is to stop using steroids. Even my Dr said we couldn't use steroids to treat it because steroids make it worse and are what cause it. My body was literally giving me an angry sign to stop using steroids. Mind blown!

What my Peri-Oral Dermatitis looked like:

I have a fabulous Naturopath (two actually), we worked hard for a few months and I managed to clear this rash and I also stopped using steroids anywhere near my chest/neck/face and made sure I washed my hands well when I used it on my body so I wasn't at risk for it coming into contact with my face. But I still wasn't quite ready to give up the steroids elsewere yet. Life went on for the next few months, symptom free. But alas, my good friend Peri started to rear its ugly head and my previous treatment with my naturopath unfortunately didn't fix it this time. My body again showing me that it was time to ditch the steroids for good!

Now at this stage, I still wasn't aware Topical Steroid Withdrawal was an actual thing. My Dr and Naturopath hadn't heard of anyone having a dependency to cortisone when I described my previous attempts at stopping it, and I still couldn't find anything on the internet because I had always called my cream cortisone and not steroids. But as the universe would have it, scrolling through Instagram one day I saw a photo of a girl who looked exactly how I did 10 years ago when I experienced that horrendous flare, I also noticed her puffy wrinkly eyes looked the same as mine did every time I would stop using my creams. So I clicked her photo, read her post and saw the hashtag #TopicalSteroidWithdrawal. LIGHT BULB MOMENT!!!!!!!!!! Is this a thing? HOLY SHIT! I've been calling it the wrong thing for all these years!!! I searched the hashtag and saw so many people who looked like me! Next stop google.......and woahhhh! Hundreds and hundreds of stories, even a dedicated world wide website of the condition along with several peoples personal blogs and stories. Finally I had figured out what was happening to me!!! But this was super scary stuff! The stories of the process of what happens when you stop steroids and the length of time people take to recover scared the absolute crap out of me. There is no way I'm ready for this! But my old mate Peri was getting angrier and angrier on my face and I knew deep down I had no choice. The creams were making my skin worse. And at my age - pre children, it was really now or never. So I took the leap and stopped using my topical steroid creams..........

"The butterfly is only beautiful because the caterpillar is brave"

Courtney xo