My Story:

From atopic eczema to burning red skin syndrome to recovery: my story of a lifelong addiction

What on earth could eczema possibly have to do with addiction? In my case, the two have been fundamentally interlinked since I was a baby.

Like many infants, I suffered from atopic dermatitis – generally known as ordinary childhood eczema. I am - and will always be - susceptible to eczema, asthma and hayfever because I am atopic and have inherited ‘sensitive genes’ from my parents.

Eczema rashes can be really difficult to treat in little ones because sometimes it can be very stubborn even if mum and dad are doing their best to identify and eliminate any dietary or environmental triggers (common irritants are detergents, dust mites and dairy). Usually children just grow out of their eczema and it’s just a case of trying to manage the symptoms in the meantime.

So why did I never grown out of my eczema? Why did it spend nearly 30 years just getting progressively worse?

 

I did my best to moisturise often and avoid anything I knew would make my skin flare up, like stress for example. But it wasn’t just a few dry, red patches on my hands and the crooks of my arms and knees like adult eczema sufferers ordinarily have. I’m speaking of an intense, full body dry itchiness and a burning red rash that covered my whole arms, neck and face. And it wasn’t just spreading hives and extreme sensitivities; it was also a constant and overwhelming fatigue and exhaustion.

I worked my way through trying to be diagnosed with lupus, diabetes, fibromyalgia, Cushing’s, coeliac disease, adrenal fatigue or - in my most extreme moment of hypochondria - ME (chronic fatigue syndrome). I kept a log through which I tracked my every move; what had I touched or eaten that had triggered a reaction in my skin? I spent hours researching each and every ingredient I’d consumed to the point where I had cut wheat, gluten, dairy, eggs, nuts, seeds, oils and sugars from my diet to discover what might be causing the problem with my skin. Every kind of allergy test (both mainstream medical and alternative) only reliably revealed a reaction to dust mites which I had already taken action against in my home.

Why, if I was following the rules and doing everything ‘right’, did my eczema continue to get further out of control? Was this to be the way of things forever? Too scared to touch or eat anything through fear of the pain it would cause? Too busy exfoliating and emolliating to get anything else done? Too self-conscious of my scabby red face to socialise and interact with the wide world? I became very depressed to the point where I genuinely questioned the point of continuing.

It was thankfully at this point I discovered that I was actually a just an unwitting addict.

One of the first line treatments for eczema is topical steroids. These are creams or ointments that contain a synthetic corticosteroid that serves to reduce inflammation and promote healing (not to be confused with anabolic steroids that are sometimes associated with bodybuilding). They are available in various strengths or potencies and are simply magic when it comes to treating most disorders of the skin. It’s important to treat eczema (particularly in children) to avoid it getting infected or impairing sleep or quality of life and so steroids are a quick, safe and effective method of achieving this.

But I’m one of the estimated 10% of atopics that are susceptible to corticosteroid addiction.

My story is apparently a fairly typical one. A small rash appears and over-the-counter Hydrocortisone (very weak) works its magic. The rash returns and the cream keeps it at bay. But after a while the rash not only returns, but spreads. Hydrocortisone isn’t cutting it any longer and so a slightly stronger preparation is prescribed. The rash continues to spread but then also starts burning red so stronger and stronger prescriptions and more frequent applications are needed.

In my case I was keeping my ‘eczema’ managed with near-daily applications of Betnovate and Elocon (medium to high strength). I’d spent years gradually climbing my way up the steroid potency ladder only to find that the burning redness just kept coming back. I had become tolerant to the effects of my medication in that repeated applications had a diminished effect. The term ‘addiction’ is used because it refers to the point at which the cessation of drug use leads to a negative effect. My addiction had built up cumulatively up over years and years to the point where stopping applications resulted in a physical rebound.

‘At last,’ I thought, ‘a solution!’

Yes, a permanent solution to my skin troubles became available whereby a recovery from addiction would mean ordinary skin and just normal, regular eczema. But the term ‘addiction’ is also quite apt because it is usually followed by a ‘withdrawal’. Topical steroid withdrawal is also known as Red Skin Syndrome because the burning red rash becomes very intense and can cover the whole body from head to toe. It’s also a proper drug withdrawal that comes with the chills, the shivers and the shakes. The various symptoms that present and the time it takes to go through the withdrawal varies wildly from person to person and depends largely on the strength of topical steroids applied and the length of application.

The first six months of my withdrawal were some of the most difficult days of my life. I experienced burning, ‘oozing’, nerve pain, swelling, insomnia, ‘shedding’, the chills and the sweats and fairly indescribably emotional turmoil. Every single minute of every single day. Nonetheless, this is a very well-documented condition having been observed in thousands of others over the course of many decades. As such, I had been forewarned of all of these things and simply had to wait them out with a little help and supervision from my GP, reassured in the knowledge that everybody heals, it just takes a long time.

Today marks one year since I stopped using all topical corticosteroids and my life has completely changed. No more random rashes, no more flaky skin, no more allergies, no more short-sightedness, no more insomnia or fatigue and no more constantly wondering and worrying what the problem might be.

Who would have thought it? There’s no mysterious underlying problem with my health; I’m actually just normal.

Corticosteroids are miraculous medicines that provide an improved quality of life for people with all manner of long term conditions ranging from eczema to arthritis. I’m just unfortunate to be in the minority that don’t react very well to them. I shudder to think what life would be like if I hadn’t taken action when I did. I now spend my spare time raising awareness of the potential for steroid addiction and reaching out to people who are as desperate as I was for answers.

Supervision from a supportive physician is strongly recommended during withdrawal from topical corticosteroid addiction. Oral corticosteroids (e.g. Prednisolone) must always be carefully tapered under supervision and must never be stopped abruptly.

Read more about topical steroid addiction in the Dermatology Times. http://dermatologytimes.modernmedicine.com/dermatology-times/news/modernmedicine/modern-medicine-news/topical-corticosteroid-addiction-may-be-b

About Jo

Jo donates her time to supporting the ‘red people’ community and charitable organisation, the International Topical Steroid Addiction Network (www.ITSAN.org). She also writes a blog about her recovery under the pseudonym, Miss Kitty Fantastico http://misskittydefeatseczema.blogspot.co.uk/. You can read more about living with eczema from talkhealth blogger Jenny http://www.talkhealthpartnership.com/blog/author/jenny-s/ who has also kindly shared her story.

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