How in the world did this happen?
We used over-the-counter hydrocortisone cream behind my son's knees to treat eczema flares, as our doctor instructed us to do. We emptied a grand total of about two tubes worth of cream over the course of a year.
Now he has a red, itchy, burning, debilitating skin condition known Red Skin Syndrome, which was caused by the hydrocortisone. It is NOT eczema, but it can sometimes be mistaken for worsening eczema, resulting in stronger steroids, leading to worsened symptoms and withdrawal, creating a vicious cycle that's horrendously painful to break.
How did we figure out the problem?
Last year we visited my son's allergist for the first time. She confirmed that he has eczema (atopic dermatitis and eczematous dermatitis) and coached me in the environmental controls I needed to do as well as sending us home with some medicines (see my previous post). It seemed to help, as his allergies and eczema improved.
We were to treat any eczema flareups with hydrocortisone cream (unless they were on his face), so we did. Not too long afterwards, I began making my own homeopathic eczema butter (only natural ingredients, all beneficial to eczema). The interesting thing about the butter is that it seemed to help his legs in the beginning, but over the next year or so it seemed to help less and less. I turned to the hydrocortisone cream more and more, till eventually it was the only way to treat those eczema flares.
Over that same year, as the flare ups behind his knees got worse, I noticed that he stopped breaking out over his cheeks. How had I treated his cheeks differently than his legs? I only used my home-made eczema butter on his cheeks, but on his legs we often used hydrocortisone cream. That made me question the hydrocortisone.
I remembered reading this heart wrenching story about a mom who discovered that her baby's skin was made worse by the topical steroids he was prescribed to make it better. So I found the article again and read the full story this time. His withdrawal lasted 18 months.
Impressed by the dramatic story of little Isaiah and the during and after pictures of other people who went off topical steroids, I followed the blogger's link over to ITSAN.ORG, which is an entire organization dedicated to topical steroid addiction and withdrawal. They also have during & after pictures of people who experienced topical steroid cream addiction & withdrawal. Here's pictures of Abigail, age 5, during TSW and after she healed, 18 months later...
I read other people's stories. I noticed that many eczema sufferers begin using hydrocortisone cream (the same over-the-counter topical steroid my son used), then move on to prescription steroid creams, then stronger prescription steroid creams, and eventually end up on oral steroids as well. "Initially, steroids are effective; however, as time passes, patients stop responding to the same topical steroid and require oral steroids. Patients usually complain that steroids “are not effective anymore”.(source) Even the literature sent home from our allergist read that "topical steroids are the mainstay of therapy for more severe eczema." I don't want that future for my son.
Where Are There Medical Studies?
It turns out that this skin condition is well-known in India and China, likely due to a more wide-spread casual use of topical steroids there. Many people even use them cosmetically in an attempt to lighten their skin, then find themselves with topical steroid addiction. Unfortunately there isn't a universal name that everyone uses for this condition. As a result, if you search Pub Med for red skin syndrome you won't find much, but it's there under a variety of other names. Try topical steroid addiction in atopic dermatitis (full article here), steroid-induced rosacea-like dermatitis, topical corticosteroid withdrawal, eyelid dermatitis, red scrotum syndrome, and the red burning skin syndrome.
As much as I wish our doctor never told me to use hydrocortisone, she did and there is no changing that. I do feel fortunate though, that at least I discovered this information at a relatively early stage of his use, before moving on to stronger creams, so he doesn't have to discover the addiction for himself after using steroid creams for 50+ years like this lady did. It does make me question why people are not made aware of the potential for topical steroid addiction, and why something with addictive tendencies is the main treatment for a chronic condition in the first place. Apparently it's an uphill battle getting the medical community to recognize topical steroid addiction (perhaps having one universal name for the condition may be a good starting point), but the withdrawal pictures are undeniable. Below is Juliana, age 26, whose topical steroid withdrawal lasted 27 months.
No More Steroids!
We decided to brace ourselves for topical steroid withdrawal and buckle down for the long haul. No more hydrocortisone cream. No steroids of any kind. We know going in to this intense healing process that his skin will get worse than it's ever been. It's impossible to predict how long the process may take (weeks, months, years), or how bad it will be for him. Worst case scenario, his skin may be red, burning, raw, itchy, oozing, flaking, he may have less energy, a harder time sleeping, have difficulty regulating his body temperature, have eye irritation, blurred vision, enlarged lymph nodes, thinning hair, and the list goes on. Some people describe the itching as being so bad that they want to die! It is recommended that people take an extended leave from work or school, as many must be cared for through this process.
I am really hopeful that since he had a relatively low amount of a low level steroid that his recovery will not be as long or awful as what others have experienced, but there is no way to know. I read that people with limited exposure (to one area of the body, like my son) may still break out all over their body during withdrawal. They may not. It seems like people's worst areas of the body during TSW are those where they used the topical steroid, so the backs of his knees will probably take the worst of it, and as for the rest of his body it's anyone's guess. We will hope and pray for a fast recovery. I can't really bare to think otherwise.
I'll update you on his progress through this process. In the mean time, if you use topical steroid cream (for one of many skin conditions, not just eczema), read up on it a bit! If you're interested in hearing from a good TSW blogger and you tuber, check out Briana Wren. In fact, today she's filming with The Doctor's TV show to speak about her experience with topical steroid withdrawal!
We used over-the-counter hydrocortisone cream behind my son's knees to treat eczema flares, as our doctor instructed us to do. We emptied a grand total of about two tubes worth of cream over the course of a year.
How did we figure out the problem?
Last year we visited my son's allergist for the first time. She confirmed that he has eczema (atopic dermatitis and eczematous dermatitis) and coached me in the environmental controls I needed to do as well as sending us home with some medicines (see my previous post). It seemed to help, as his allergies and eczema improved.
We were to treat any eczema flareups with hydrocortisone cream (unless they were on his face), so we did. Not too long afterwards, I began making my own homeopathic eczema butter (only natural ingredients, all beneficial to eczema). The interesting thing about the butter is that it seemed to help his legs in the beginning, but over the next year or so it seemed to help less and less. I turned to the hydrocortisone cream more and more, till eventually it was the only way to treat those eczema flares.
Over that same year, as the flare ups behind his knees got worse, I noticed that he stopped breaking out over his cheeks. How had I treated his cheeks differently than his legs? I only used my home-made eczema butter on his cheeks, but on his legs we often used hydrocortisone cream. That made me question the hydrocortisone.
I remembered reading this heart wrenching story about a mom who discovered that her baby's skin was made worse by the topical steroids he was prescribed to make it better. So I found the article again and read the full story this time. His withdrawal lasted 18 months.
Impressed by the dramatic story of little Isaiah and the during and after pictures of other people who went off topical steroids, I followed the blogger's link over to ITSAN.ORG, which is an entire organization dedicated to topical steroid addiction and withdrawal. They also have during & after pictures of people who experienced topical steroid cream addiction & withdrawal. Here's pictures of Abigail, age 5, during TSW and after she healed, 18 months later...
Where Are There Medical Studies?
It turns out that this skin condition is well-known in India and China, likely due to a more wide-spread casual use of topical steroids there. Many people even use them cosmetically in an attempt to lighten their skin, then find themselves with topical steroid addiction. Unfortunately there isn't a universal name that everyone uses for this condition. As a result, if you search Pub Med for red skin syndrome you won't find much, but it's there under a variety of other names. Try topical steroid addiction in atopic dermatitis (full article here), steroid-induced rosacea-like dermatitis, topical corticosteroid withdrawal, eyelid dermatitis, red scrotum syndrome, and the red burning skin syndrome.
As much as I wish our doctor never told me to use hydrocortisone, she did and there is no changing that. I do feel fortunate though, that at least I discovered this information at a relatively early stage of his use, before moving on to stronger creams, so he doesn't have to discover the addiction for himself after using steroid creams for 50+ years like this lady did. It does make me question why people are not made aware of the potential for topical steroid addiction, and why something with addictive tendencies is the main treatment for a chronic condition in the first place. Apparently it's an uphill battle getting the medical community to recognize topical steroid addiction (perhaps having one universal name for the condition may be a good starting point), but the withdrawal pictures are undeniable. Below is Juliana, age 26, whose topical steroid withdrawal lasted 27 months.
We decided to brace ourselves for topical steroid withdrawal and buckle down for the long haul. No more hydrocortisone cream. No steroids of any kind. We know going in to this intense healing process that his skin will get worse than it's ever been. It's impossible to predict how long the process may take (weeks, months, years), or how bad it will be for him. Worst case scenario, his skin may be red, burning, raw, itchy, oozing, flaking, he may have less energy, a harder time sleeping, have difficulty regulating his body temperature, have eye irritation, blurred vision, enlarged lymph nodes, thinning hair, and the list goes on. Some people describe the itching as being so bad that they want to die! It is recommended that people take an extended leave from work or school, as many must be cared for through this process.
I am really hopeful that since he had a relatively low amount of a low level steroid that his recovery will not be as long or awful as what others have experienced, but there is no way to know. I read that people with limited exposure (to one area of the body, like my son) may still break out all over their body during withdrawal. They may not. It seems like people's worst areas of the body during TSW are those where they used the topical steroid, so the backs of his knees will probably take the worst of it, and as for the rest of his body it's anyone's guess. We will hope and pray for a fast recovery. I can't really bare to think otherwise.
I'll update you on his progress through this process. In the mean time, if you use topical steroid cream (for one of many skin conditions, not just eczema), read up on it a bit! If you're interested in hearing from a good TSW blogger and you tuber, check out Briana Wren. In fact, today she's filming with The Doctor's TV show to speak about her experience with topical steroid withdrawal!
Disclaimer: I am not a medical professional and am not telling anyone what they should do to treat themselves. I'm a mom, and I'm sharing our story because I think awareness and information are a good thing. If you find information in our story that may be useful to your family, please discuss it with your doctor. Also check out www.itsan.org to find out more about topical steroids, their addiction and withdrawal.
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