Our Story – from the beginning
L’s skin and body became addicted to topical steroids used to treat his eczema and he has been going through withdrawal since June 17, 2013. He is healing daily and will ultimately be completely healed, but steroid addiction is common and often undiagnosed. The condition is called Steroid Induced Eczema, Red Skin Syndrome, or Topical Steroid Addiction/Withdrawal.
Both boys had eczema as babies. J outgrew his eczema by two years old. L’s never resolved despite removing allergens from his diet, using creams, baths, humidifiers, natural clothing, soap, etc. The expert dermatologist and allergist we took him to just kept putting him on different types of topical corticosteroids. Most know of these topical steroids – hydrocortisone is an over the counter one used by most of us at one point or another. Although I questioned repeatedly the safety of using these long term, I was reassured by the expert allergist that this was no problem. We ALWAYS used them according to directions given – use for no more than x days (depending on the steroid this was 3, 7, or 14 days), then take a break of a minimum equal amount of time (often the breaks were for much longer than the minimum). L’s eczema continued to get worse. Last Christmas, 2012, the skin on the tops of his feet was so thin and fragile that the slightest rub caused a hole in the skin, so I took him off the steroid creams completely since they were no longer working and skin thinning was a documented side effect. Little did I know what was to come.
L looked great initially and then slowly but surely refused all creams and lotions he’d traditionally been okay with, refused baths because they stung, and became covered by a whole body rash. By March 12, 2013, he was swollen, red, and flaking/peeling like he was a sunburn victim whose skin was peeling. He was itching head to toe uncontrollably. He was so swollen he looked like he’d been stung by a hive of bees. After seeing our pediatrician, we took him to the triage unit at one of the leading hospitals for allergy/eczema in the US which, we thought luckily, was here in Denver, where our allergist (who is considered an expert) was, and was told that he had bad eczema. We were directed to reinstitute baths and steroid creams – this time one type of steroid cream for his scalp, one for his face, and one for the rest of his body, and cover him for two hours three times/day in wet wraps after the 3x/day baths. Despite the screaming from the baths stinging his skin, his skin and sleep improved within a few days, and we thought all was well, despite the questions that remained as to the cause of his terrible “eczema”.
Within a month of instituting the new protocol, I began noticing that whenever we tried stopping the face and scalp steroid creams as we were instructed to, his face would start to swell and get red again. I was informed that this was his eczema returning and instructed to start using the steroids again. This also happened on his body, but the immediacy and severity of the reaction was less intense than the face. Per the expert allergist’s direction, we were doing one to three baths daily, then applying either steroid or moisturizing creams, and applying wet wraps, depending on the condition of the skin on each part of his body. We were exhausted. Taking care of his skin took a minimum two hours a day to deal with.
When I was up at 2AM yet again in mid May with an itchy L, who the steroids and antihistamines were NOT working for, I happened upon the International Topical Steroid Awareness Network as I looked for answers via Dr. Google. If you look at www.ITSAN.org, you will see ALL of of the medical history of “eczema” symptoms. They were exactly what L was experiencing! Sometime during 2012, his body became addicted to topical steroids and he had been going through withdrawal when he was swollen, red, itching and peeling in March 2013 after I withdrew the steroid creams! And he was starting withdrawals every time we withdrew the steroids from his face! We had our answer.
What began as eczema as a baby had turned into a full body addiction to the cortisone given to his body daily as prescribed by his doctors. Cortisone is a hormone. If the body gets it from a synthetic source, such as a topical steroid, the body decreases its own production and when you withdraw the synthetic source, the body goes into chaos while it relearns what it is supposed to be doing. The skin absorbs the steroids at various percentages: the body generally 7%, the face, scalp, feet, genitals up to 30%. Needless to say, I emailed and called his doctors immediately. We have had amazing support from our pediatrician and naturopath. Neither felt qualified to diagnose the condition, though. We could not find a dermatologist or allergist in Denver who was willing to acknowledge his condition or that the steroids could cause this addiction despite it being well documented -by the FDA and NIH, no less- that there can be steroid induced eczema, steroid induced rosacea, and that the body gets addicted to oral or injected steroids all the time. It is listed in the side effects of the topical steroids’ inserts as affecting the hypothalamus-pituitary-adrenal axis.
So I took L to Los Angeles for a diagnosis June 17 by one of the few dermatologists in the world to acknowledge, diagnose, and treat the condition. He provided a diagnosis and treatment plan, and started withdrawals- intentionally this time and according to the treatment plan- that day. His withdrawal the second time around has not been quite so harrowing – for this I have no reason other than the BodyTalk alternative medical treatment we began giving him regularly in March. L is incredibly itchy and up nights on a frequent basis since cortisol levels are lowest at night, but he is healing.
2 weeks prior to stopping steroids – His whole body started to rebound, not just his neck and face anymore. His back – during a rebound flare before stopping steroids completely – skin swelled, deep, dark red and welted. His face, neck, arms, and legs would look exactly like this and he would itch constantly.
We can already see stronger, healthier skin than we’ve seen in ages. He is healing without baths or lotions of any kind – some people need these as comfort measures, others don’t as the baths or creams actually sting the skin – L falls into the stinging skin/bath is a torture chamber category. There may be a time on his healing journey when he starts to need them again, but right now his body is healing itself. There are scientific studies that prove that the body recovers its cortisol functioning, that the IgE levels decrease again (they go through the roof during withdrawal), that the skin starts creating its own oils again, through the withdrawal/healing process.
It has been an amazing journey and wake up call to question all drugs given. L was also building tolerance and becoming addicted to the anti-histamine prescribed to help him sleep, so we took him off that since it helped with sleep less than 50% of the time. Topical steroids are a DRUG and must be treated as such. They are meant for short term use. The body can become addicted in as few as three days. They should NEVER be used on the face, nipples, or genitals as a first line of treatment, despite being prescribed for babies with diaper rash or eczema on the face, moms with breast infections, or adults with hemorrhoids. These parts of the body just absorb too much, too fast. They should NEVER be a first line of treatment for any “nuisance” medical issue.
The caregivers can also experience hormonal disruption and withdrawal when the steroids stop. Since I applied the creams without gloves, and just wiped my hands after application, I had also been getting daily doses of synthetic cortisol. I experienced a MUCH more mild withdrawal, but suffered from side effects of withdrawal such as boils, nailbed infections, and swollen glands repeatedly with no cause for several months. Many other parents experienced the same unrelated, varied symptoms, and these are also symptoms of all the people actually going through withdrawal.
I have found a wonderful online community with hundreds of thousands of “Red Skin Warriors” (they call themselves this due to the red shade the skin turns at various points of flares) who have assisted us through this journey. Indeed, another boy, a year older than L and a month ahead of him in withdrawal, lives a mere five miles from us.
PLEASE, if you have read this far, think about someone you know who is using a steroid cream to control their eczema or rosacea, and advise them to check out ITSAN’s website. Since most doctors and pharmacists are not educating their patients about the side effects of long term steroid use (or advising against it!), then we must spread the word via word of mouth. Slowly we are educating more doctors, and indeed finally have a couple of doctors, pharmacists and nurses who have discovered that they too (or their children) are addicted to topical steroids and began the withdrawal process, but it will be a long road to educating the rest of the medical profession and overcoming the lax guidelines the FDA has allowed pharmaceutical companies to use. Patients must educate themselves about the side effects of all drugs they are taking and watch for those effects.
9 months post steroids – Smooth, healthy skin. Remaining areas to heal are the eczemous looking spots like this behind the knees, the tops of his feet, and back of heels. Everywhere else is healed!
This feels a bit like a fantastical sci-fi story, but we have been living this daily for nine and a half months intentionally, and accidentally lived it for three months at the beginning of 2013. L’s full recovery will not happen for potentially another two years. Typical recovery times for kids are six months to three years (with the average time being between 1-2 years). Adults are one year to four or five years. It all depends on usage history and the body of the individual. The skin always heals first, with the itching being the last symptom to resolve. Our family takes comfort in the improvement we see daily in L’s skin, know that flare ups always result in better skin afterwards, and press on, living life as normally as possible.
Thank you for reading. Someday I’m guessing you’ll meet someone and hope that you will think back to this letter and make a suggestion to them to check out steroid induced eczema. This condition of addiction is much more prevalent than doctors would lead us to believe. Most adults with “worsening eczema” are most likely addicted to the topical steroids.
If you can hold out space for L’s healing more quickly and easily any time you think of us, we would appreciate it.