There’s a distinct difference in red skin (RS) vs red skin syndrome (RSS), the former being an actual result of improper steroid use as defined by medical doctors and the latter, largely a phobia born of ignorance and propagated by self-diagnosed bloggers. It’s most often described as the red skin that appears after using a round of steroids. I can’t count the number of times I’ve seen this description given by TSW advocates on different Facebook groups for eczema. Sadly, this one simple misunderstanding is what seems to have led to the recent phenomenon of enduring TSW (topical steroid withdrawal) and causing much unnecessary suffering.
Dr. Aron wrote the following in regards to TS (topical steroids) and defining TSW:
There has been much discussion about the issue of TSW so I would like to shed some light on the matter. In patients where topical steroids ( TS ) have failed to provide a solution to the AE , there are many, it is the inappropriate use of these products that cast them into disrepute , not the TSs themselves. Potent steroids for short periods of time followed by reintroduction after the inevitable rebound of the AE is not a good treatment approach. Mild, dilute TSs for long periods of time is a much better option but this is a subject for a future post.
Now to the nub of the issue. Whatever regimen of treatment is advised , unless the bacterial infective element of the AE is treated effectively, the therapy will fail sooner or later and it this repetitive failure which leads to parents giving up on TSs. However, researchers have published an article in the respected journal Nature ( November 2013, Google alpha toxin staphyloccoccus in atopic dermatitis ) in which they note, inter alia, that 90% of patients with AE have staph infection. Yes 90 % ! These bacteria secrete a toxin ( poison ) which damage the cells relating to itching and burning and therefore it is essential to eliminate these bacteria . How best to achieve this will also be the subject of another post.
There is a doctor in America who advocates TSW as a treatment of choice, he notes on his website that .. it may take, weeks, months or years … for the eczema to subside, he takes no cognisance of the issue of secondary infection and thus is, in essence, is condemning the patients/parents who in desperation follow his line of reasoning to weeks,months or years of chronically infected skin with the attendant implications which all who read this post will be well aware. I have the greatest sympathy for followers of TSW but there is a better way .
The short of this it that Dr. Aron is acknowledging the inappropriate prescription that is standard for eczema (high doses of steroids for a short period) and pointing out that the resulting red skin is exactly what is to be expected. This isn’t a “steroid addiction” as so many have been led to believe. This is the logical outcome.
Dr. Aron’s 30+ years of expertise and treating eczema aside, those who have chosen to use the Aron Regime have the advantage of additional insight into this issue. The vast majority have all suffered with what TSW advocates have coined Topical Steroid Addiction or Red Skin Syndrome. Yes, our children (in most cases) all received topical steroid prescriptions prior to Dr. Aron and we all experienced rebound. On Dr. Aron’s Facebook Discussion page, we’ve seen children with red, flaming, oozing and leathery skin. We’ve seen bright red sleeves and children who were hot red from head to toe – almost always worse after quitting a round of prescribed steroids. We’ve witnessed this in infants, toddlers and even adults. We’ve seen it hundreds of times since the Facebook group formed in early 2014. In almost every case (and as an active admin in the group, I don’t personally recall any contrary to this), the red skin has never been an issue when the skin is treated properly, with topical steroids, as prescribed by Dr. Aron. It goes away.
If you’ve bought into the Topical Steroid Addiction hype for any amount of time, this is where you should be scratching your head asking how this is possible? It’s only possible, of course, if the diagnosis of red skin syndrome is most often wrong – and it is.
Many of the Dr. Aron Facebook members have put their kids through the emotional and physical toil of TSW before finding Dr. Aron. They’ve seen their children suffer months and years for a condition they never even had, before trying Dr. Aron and seeing the itch and suffering of eczema go away in days (in most cases). Indeed, Dr. Aron’s patients have earned their optimism whereas none of the Dr. Aron skeptics have earned their skepticism.
This has all led to a better understanding of what Red Skin Syndrome truly is and it’s something that the majority of all skin doctors have been telling us all for a long time – a condition that is possible by an enormous amount of inappropriately prescribed, high-potency steroids being used on the skin for many years but unlikely to be found in most all adults having used topical steroids and even more of an anomaly in children. If we are to use the sample size of patients that have come to be treated under Dr. Aron by way of Facebook (several hundred), a case could be made that nearly every case of self-diagnosed red skin syndrome is an incorrect diagnosis. That’s frightening as there are a great number of babies and children being forced to endure the hardships and high risks of TSW because of advice their parents found on the internet.
It’s worth mentioning that most parents that have come to adopt the philosophies of Dr. Aron have done so hesitantly. They’ve heard so many stories about the horrors of steroid addiction that they are very slow to accept the facts as Dr. Aron presents them. Many are still expressing doubt when they start treatment under Dr. Aron – often doing so out of the sheer desperation that parents of children with severe eczema often feel. It is in seeing the results for themselves and letting go of their former beliefs, that these parents (myself included) finally come to fully understand the realities of TSA and the horrors of TSW.
In a recent Facebook post, one group member describes her experience in using and coming to understand Dr. Aron’s Regime:
This sums up my feelings to a tee. I firmly believe that Dr. Aron just gets people to the same place that TSW gets them in days vs months or years. My own son was once suffering from the symptoms of RSS – red, oozing skin which always presented itself in the worst manner after a bout of steroids. Today, his flares are even better than the first 2 years of his life when my wife and I didn’t use any steroids at all. They’re like small rashes now, that he is barely bothered by, and they only appear once every couple months or longer.
The below video was the actual video I sent to Dr. Aron in October of 2013, when he requested pictures of my son for an online consultation. This flare was just a few days after we had stopped using a steroid – what many would call RSS (and what many did when I was posting to several different forums asking for advice) but what Dr. Aron informed me was grossly infected skin I needed to address immediately as to avoid further complications. Had I gone by the definition of Red Skin Syndrome, as it’s most often described by various internet sites today, there would have been no disputing that my son had RSS – as steroids always worked to clear the skin but as soon as we discontinued their use, the skin turned red while burning, itching and swelling almost immediately. Thankfully, I demanded more than an internet description for a diagnosis of RSS and such was not a diagnosis my son’s dermatologist was willing to give.
For those who do reach the end of TSW, many report small flares that are very easy to maintain – same as my son. Some (though it seems few) report a complete remission of eczema – just as there are few people using Dr. Aron’s regime that can claim this — because neither method is curing the eczema. Both get it to the same place and then there are those statistical cases where people truly outgrow it, as has always been documented with eczema.
90% of my son’s condition was made better in the first week of treatment with Dr. Aron – using topical steroids, despite the fact that the previous round of stopping topical steroids was what caused him to flare so badly. As Dr. Aron explained above, it’s not the topical steroids causing the red skin problem – it’s stopping the steroids all at once, rather that’s due to irresponsible prescription (the case with my son) or application.
If you have previously bought into the belief system of TSA, I would challenge you to consider how you came about that diagnosis? Most tend self-diagnose on the same day they read about TSA and are unwilling to consider any other opinion that is contrary to TSW at that point. The very nature of the TSW ‘treatment’ (or lack thereof) requires the ‘patient’ to view all steroids in a negative light – but also dermatologists, doctors, and anyone who expresses a belief contrary to those held by TSW advocates as untrustworthy. The primary site for TSW information (as well as the TSW Facebook groups) censors and boots members that express an opposing view. What is there to fear if the truth is so indisputable? In Dr. Aron’s Facebook group, by contrast, all questions are welcomed – even on the topic of TSW/TSA.
What if the information you’ve been hearing is simply wrong? Why are there so few doctors and dermatologists writing about TSW and choosing to recommend topical steroids instead? What does your doctor, dermatologist or GP say? TSW advocates are generally in strong opposition to what most doctors believe and just maybe – that should be a red flag in itself?
I truly believe that Dr. Aron’s regime provides the least amount of suffering and pain for children with the least amount of side-effects – TSW included, as that is so hard on the metabolism/immune system and self-confidence. My son doesn’t itch, scratch or suffer in the slightest anymore. His skin looks immaculate. I cannot thank the good doctor enough.
For the majority of red-skin sufferers, let’s start calling RSS what it really is – RS resulting from steroid rebound due to the skin not yet being properly treated. This is by no means an indication that your body has become dependent on steroids. Get the skin properly treated and the suffering ends. It really is that simple in most cases – at least for those who are being treated by Dr. Aron.