Living With Atopic Eczema
Six years ago, at the age of 25, I was diagnosed with severe atopic eczema, meaning my skin will forever throw a hissy fit and explode into an itchy, burning rash whenever it feels like it. It’s under control now and I once again feel like a normal person, but for any new or fellow sufferers I thought I would share my story. For the squeamish, worry not, I'll spare you any horrible pictures and show some nice allegories instead, such as this dapper chap on the right.
What is Atopic Eczema?
Firstly, I should explain a bit about my condition. Atopic eczema or atopic dermatitis is when your skin suddenly throws a strop and becomes itchy, inflamed and as dry as sandpaper. It's a different beast to discoid, varicose or contact eczema, so right from the outset you can see that "eczema" is a generic term covering many different conditions. It's usually treatable with emollients (heavy duty moisturisers) and corticosteroid or "steroid" creams which dampen down the reaction of your skin. These can vary in strength, so ideally you need to use the weakest but most effective one possible, which of course can also vary depending on your body.
Most of the available information about atopic eczema is centred around babies and children, but one in 12 adults is affected by it, and no one really knows what causes it.
In my case, it's probably hereditary and due to a weak skin barrier coupled with an overactive immune system. For example, say your immune system is a gardener. On seeing a slug they would either stamp on it, throw it over the fence or ignore it. Mine would do this:
and rinse and repeat for any other slugs they saw, because my garden is particularly crap at letting them in.
The subsequent blast and fallout is what causes my eczema to flare up. And, just as a nuclear-ravaged landscape will hum with radiation for years on end, I will always have eczema present somewhere on my body, because there won’t be a large enough gap between flare-ups for it to recover fully.
As disheartening as this may sound, especially for people experiencing their first blast, I want you to know that, even though there is no cure, my eczema now has a minimal effect on my day to day life. It took a long time for me to get here, but I sincerely hope the following hard-earned lessons are of some comfort or amusement to fellow scratchers, and even give a short-cut to finding the most effective treatments for others.
So, starting from the top:
Getting a Patch/Prick Test Probably Saved My Life.
A patch test is when a dermatologist checks your skin to see if any particular material, ingredient or chemical causes your eczema to flare up. To do this they need to physically stick samples of said material on to your skin. This is usually done on your back, and feels like someone has plastered little labels all over you, but apart from the occasional rustling I didn’t notice it after a while. Did I mention I had to wear this honeycomb of stickers for a whole week?
Unless you have a dirty mind, the prick test is exactly what it sounds like. The doctor will prick your skin with the essence of various allergens, such as seeds, tree bark, dog and cat hair, and then examine you again later to see if you reacted.
Although none of the materials or allergens used directly affected my eczema, at the end of the week I found out one or two points that are equally important, such as:
- I’m now allergic to dogs and cats
- I’m not allergic to dust
- Permanent hair dye can kill me.
That last one was a bit of a shocker, but explained the bizarre, black, bubonic plague-like nodule that had appeared in the centre of my back after two days. It was good timing too, because I was umming and ahh-ing about permanently dying my hair red. (For any science bods, it's the chemical PPD that would have finished me off.)
Ah the joys of the immune system, and how it can respond to naturally occurring chemicals as well as artificial ones. Speaking of which:
Don't just rely on "natural" remedies.
Thinking about this still makes me angry, even after six years.
The internet is rife with anecdotal stories about how a daily teaspoon of tea-tree oil, a facial of aloe vera, or dancing naked under a full moon with a mouthful of mint cured someone’s eczema. But all of these stories, if they aren’t steeped in horse manure, ignore one important fact that I mentioned earlier: there are different kinds of eczema, and people’s skin can react in different ways. Also, atopic eczema can decide to pack up and leave for no reason whatsoever - not because you spilt cooking oil on your arm and it magically decided to work.
The reason these stories make me so angry is because I fell for them, hook line and sinker. I found so many forums proclaiming the success of using this or that, and that steroid creams “can scar you for life and aren't nearly as effective", that I decided to put away the horrors of corticosteroids and focus on these wonderful natural remedies that dermatologists everywhere were just crazy to overlook. Or they were just focussed on keeping the big pharmaceutical companies in business, since that’s their underlying motivation, right?
Here are the remedies I tried, each one for 4 weeks at a time. Numbers 5, 6 and 7 I did together.
- Drinking, cooking with and bathing in nothing but mineral water. This cost a fortune, but I was convinced water was the culprit, especially as my skin had miraculously cleared up for a time when I was in France.
- Applying aloe vera oil to affected areas - from an actual aloe vera plant in my kitchen - every day.
- Applying oregano oil to the affected areas every day.
- Washing my face with tea tree oil every day.
- Using olive oil and sugar as an emollient every day.
- Applying magnesium oil to the affected areas every day. I had to stop this after four days.
- Taking a cold bath with nothing but Dead Sea salt.
The result? The mineral water put my wallet on a diet, the aloe vera oil stung like acid and made my skin clammy, the oregano oil just made feel hungry, the tea tree oil stung like molecular acid and nuked my nostrils, and the olive oil and Dead Sea salt gave me nothing more than a few nanoseconds of respite from one of the other problems I had.
As for the magnesium oil, this exacerbated said problem, which leads me to my next point.
Unless your doctor physically restrains you, don't stop using steroid creams all together.
When I threw away these items and went cold turkey, I began a descent into a dark pit of pain, horror and suicidal thoughts.
Have you ever been badly sunburnt? Imagine that, but all over, except for the soles of your feet and the palms of your hands. It's also maddeningly itchy, so when you scratch, it’s both satisfying and painful enough to make you howl. Simply lying on bed sheets makes your skin chafe and roar, and the skin between your eyes, your nose and mouth, your chin, and your wrists splits right open. You are then permeated by a wonderful cheesy smell caused by infection, are unable to sleep, move or function like a normal human being, and you age 60 years whenever you look in the mirror. To top this off, using some of the above remedies on your raw skin makes your screams so bloodcurdling that your neighbours think you’re being butchered.
This was my world without any steroid creams, and it lasted for 6 weeks.
There were only two possible outcomes. Fortunately, I chose the one that involved going back on the creams rather than the one where you discreetly book a flight to Switzerland.
Obviously, my atopic eczema is severe, so I don't know if other sufferers would also have their psyche trapped screaming at the bottom of a pit if they did the same. All I know is, if you're thinking of going down the so-called "natural" route, please check with your doctor first and use these natural remedies in conjunction with your normal treatments if you can.
Part of the reason people are frightened of steroid creams is because prolonged use of the strongest ones can cause skin atrophy. But let me be clear about this - this takes a long, long time to take effect, and you need to be using the heavy duty stuff for a while. I'm talking years. My own grandmother has my condition, and the creams she used were much harsher, but she didn't and doesn't suffer from skin atrophy. I know this is equally anecdotal, but it's one of the main lessons I learnt.
For babies and children this is more of a risk because their skin is thinner, but for adults, this really isn't as big of a bogeyman as implied, especially as creams are becoming more and more advanced. In fact, more than one of my dermatologists tutted that the vast majority of severe skin problems they see are due to people like me who didn't use enough steroid cream, not the opposite.
Going back to my story, as an emergency case I was put on corticosteroid pills; within 48 hours I had resumed my human form. The next step was to try other treatments to help mitigate my eczema, because the pill version of steroids is even more problematic, especially when used in conjunction with anti-depressants and sleeping pills.
Taking this next step brought me to my current situation, so another piece of advice I can give is:
Don’t be afraid of extreme solutions.
Since my case was so severe I had to see several different skin specialists, and more than once some terrifying words were uttered, such as “radiation” and “immunosuppressant.”
It’s common sense to be cautious with things that may or may not create superheroes, but to discount them entirely when you’re in pain and uncomfortable is needless.
The first option slapped on the table was a lotion called Protopic. This is an aforementioned immunosuppressant that you use on your face. At the time, my face was pretty bad and if I didn't use hydrocortisone cream on it every single day it would flare up like a baboon's arse. I used the Protopic for a short while and this seemed to take care of things, but you have to be careful in direct sunlight, as well as make sure you didn't ingest it or spill it on anything.
This wasn't especially practical, so soon after they brought out the two big guns: UV light treatment, and an immunosuppressant pill named azathioprine.
UV light treatment is when they bombard your eczema with UV rays to dull it down. It's not quite the same UV rays as sunshine, but at any rate it would have required me to go to the hospital for 2 hours each week and hope it made a difference. My skin hated sunshine, and given the horror of what I'd endured I wanted a more definitive treatment.
So, instead, I went for the immunosuppressant pill which turned off a couple of molecules in my immune system, made my pee turn fluorescent yellow (nice) and required weekly blood tests for the first month and monthly blood tests thereafter.
Was it worth it?
For about 12 months my eczema shrank back and was barely noticeable. Once or twice I'd dab some steroid cream on a couple of places, but for the most part it was like being back to normal again. Of course, having a needle jabbed in my arm on a regular basis wasn't great, but it was to keep an eye on my liver function, and after a while you get used to it and can call yourself a badass. You can't stay on azathioprine for more than a year, and I was worried about coming off of it, but I have to say my current state is more than due to having had this pill in my system.
So, in conclusion:
Find out what works for you.
This is the most frustrating part of the process. So much of my time was spent trying many different things in desperation and failing. But when the clouds clear and you find the treatments that give you your life back, there's no feeling like it.
So what's my current regime?
1. Moisturise with Double Base emollient once a day.
2. Apply a tiny drop of Elocon corticosteroid cream (0.1% strength) every day to affected areas (it takes a while to work out which parts really need it these days).
3. Take a cool/cold shower with Double Base every other day.
That's it. Even when my eczema flares up, it's a soft, blurry-looking rash on my arms and legs that's only noticeable if you get closer to me than my husband does. I can wear the same clothes I always did, go out in the sunshine, and although I mentioned being allergic to cats, I have a cat of my own with absolutely no issues.
The only time I'm aware of this is if I go to the vet's, but a bog-standard antihistamine tablet from the chemist takes care of that.
There's a reason I said that my condition has a minimal effect on my life rather than an impact. In other words, I occasionally tolerate rather than suffer from eczema.
This could be a combination of the eczema changing with age and the effects of the treatments carrying over. In any case, it's barely even a conversation topic with me any more, despite what the length of this hub might tell you.
I sincerely hope your journey is or has been less painful than mine, and that this has been of interest. You never know, I could have magically cured everything with that naked full moon mint dance, but simply feeling like a human being again is good enough for me.
© 2014 Okapina