It’s Probably Not Red Skin Syndrome

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:

From all that I’ve read (I’ve been in this group since its inception), from what Dr. Aron has told me himself, and from my own personal experience with my two children, there is no rebound. The skin is never in the state that it was before.
  
I think what makes the difference between Dr. Aron and TSW is that Dr. Aron fixes the skin barrier almost immediately while TSW waits for the body to do this on its own, which is a huge ask and is so variable from person to person. He stops the itch, and so stops a number of knock-on effects of the itch, including the constant scratching, which further infects and inflames already broken skin, the lack of sleep, which has been proven in study after study to have a huge impact on healing, growth, development, and immunity, and the stress, the hormonal effects of which are not always immediately visible to the naked eye but nevertheless have a massive impact on a body’s functioning, including immunity, inflammation, and healing. He also calms the inflammation and nixes the incessant trigger of natural skin bacteria, which is not a problem for non-eczematous skin but a major irritant for us/our kids.
  
So he achieves what TSW aims for but much, much quicker and with no suffering. And I think we have to be frank about what TSW claims to be able to do in terms of giving people perfect skin and a steroid free life. I did a ton of research on TSW before I decided to go with Dr. Aron, and I was hard pressed to find even half of the cases where they had perfect skin ALL THE TIME and were steroid free. Perfect skin most of the time, sure, occasionally (though I must say, these seemed few and far between–the odd very lucky case that had got through ‘the process’ in under a year and could boast skin without a single flaw) but ALL the time? I can think of one case I read where the little girl had gone through TSW in about 9 months and didn’t have any eczema after that. Many would say that once her skin had healed, the predisposition for eczema had gone into remission and so that was why she didn’t have any flares. But she was about 6 or 7 (the age at which most docs say kids will usually ‘outgrow’ eczema)–to be totally sure that TSW has delivered on its ultimate promise of clear skin for life with no steroids, we need to wait six or seven years for her to go through puberty, or another dozen to see how pregnancy affects her.
  
My point is, TSW has not been happening for long enough for ANYONE to claim that it cures TSA and underlying eczema and guarantees people normal skin forever. What I see, from the ‘success’ stories I’ve encountered, is that SOME people will eventually achieve the clear skin, but they will still ‘flare’, however far and few between these flares become, or have patches of eczema that they just live with without treating. This is no different to what Dr. Aron achieves in the long term for pretty much ALL of his patients, except that the flares that occur with his patients following treatment are nothing like the horror of the TSW flares, and he recommends treating them briefly with steroid because, in actual fact, he has proven steroids aren’t the scary devils that so many believe them to be. When used effectively, pretty much anyone, including those who have previously been in TSW, can respond well and taper down.
  
And for some in this very group, in spite of its youth, (can’t comment on the old timers as there may well be many more), Dr A has brought them to exactly that end that TSW promises: clear skin and no creams.
  
Doing this treatment requires a major shift in thinking if you have a phobia of steroids, however that phobia came about (experience, hearing stories of others’ experiences, extremely poor treatment from medical professionals in the past, etc). It required a massive leap of faith for me, especially considering this group didn’t exist when I gave it a go. And it has taken months for me to relax and really believe that we were never going back to square one. But we aren’t. After years of rebound, increasing potency of steroids, spreading eczema and hopelessness, my children have completely clear skin, have tapered down their doses from 5x/day to once every 5 days for my eldest and once every 3 days for my youngest. On the rare occasions that they do flare, they calm down quickly and are straight back to their maintenance routine. I would bet good money my eldest at the very least will be off the creams all together after this winter. Nothing short of miraculous. It is the real deal. Really.


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.

9 months of treatment by Dr. Aron

After 9 months of treatment by Dr. Aron

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.

7 replies
  1. jredmond
    jredmond says:

    In all fairness, there are enough people suffering from this condition to prompt National Eczema Association in the U.S. to convene a task force to look at the scientific evidence on the issue, including studies and reported cases. Yes, that means there are studies and reported cases for the task force to review. In fact, NEA’s president and CEO was recently quoted in the press: “It (RSS) does appear it is an actual clinical condition….” She goes on to say that prevalence data does not exist at this time. “Certainly, a bucketload of research is needed on this. We’ve only got the tip of the iceberg.” I don’t think it can be any more clear than that. The condition does exist and the National Eczema Association at this time, even with all their highly skilled physicians and researchers, cannot give a number on how many people may or may not be suffering from this, so how can anyone else? I think that is a fair question.

    The one question I have for you and I am sure other readers do as well: Are people able to stay off steroids once they complete Dr. Aron’s treatment method? Is your son completely off steroids and if so, for how long? If he is off them, did he taper and for how long? I have also heard that Dr. Aron tapers, but that his end goal is not necessarily to be steroid free?

    Reply
    • Jeff Kastner
      Jeff Kastner says:

      “In all fairness, there are enough people suffering from this condition to prompt National Eczema Association in the U.S. to convene a task force to look at the scientific evidence on the issue, including studies and reported cases. Yes, that means there are studies and reported cases for the task force to review. In fact, NEA’s president and CEO was recently quoted in the press: “It (RSS) does appear it is an actual clinical condition….” She goes on to say that prevalence data does not exist at this time. “Certainly, a bucketload of research is needed on this. We’ve only got the tip of the iceberg.” I don’t think it can be any more clear than that.”

      There might be a bit more clarity to be gained when we don’t take the comments out of context. The article you reference can be found here. NEA’s president Julie Block’s actual quote was “The general consensus is that it (RSS) is a relatively rare phenomenon, however it does appear it is an actual clinical condition,” which, she says, “is distinct from other things.” She goes on to add, “The truth of the matter is that topical corticosteroids have been used for over 50 years. They remain the most effective and widely used drug in dermatology. There is an appropriate way to use them.”

      This is the same position ETSIN supports. While it appears that RSS is an actual clinical condition, it is quite rare. We simply want to encourage people to seek out a diagnosis of RSS by a health professional before self-diagnosing children with such a serious condition and subjecting them to the high-risk and painful solution of steroid withdrawal for what well may be no reason at all.

      “The one question I have for you and I am sure other readers do as well: Are people able to stay off steroids once they complete Dr. Aron’s treatment method? Is your son completely off steroids and if so, for how long? If he is off them, did he taper and for how long? I have also heard that Dr. Aron tapers, but that his end goal is not necessarily to be steroid free?”

      My son went from several applications a day down to what Dr. Aron considers maintenance. In the case of my son, we’ve had to use topical steroids once in the last 2.5 months for one weekend. This was for a very small flare that resembled a rash. Prior to this, he was on them daily for a little over nine months – tapering down the entire time, as Dr. Aron does with all of his patients. It has been the first time in my son’s life that he hasn’t had to deal with eczema or the associated pain and itch.

      Being “steroid free” at the end isn’t a goal that we’re concerned with as using topical steroids once every couple months or so carries virtually no risks at all. The The British Journal of Dermatology echoes this sentiment in a 2008 published medical study.

      The advice to patients to use their topical corticosteroids sparingly or to spread them thinly is based largely on concerns related to the use of the most potent steroids. Yet, the vast majority of patients are using milder corticosteroids, for which evidence of adverse effects such as skin atrophy or HPA axis effects is lacking. Even with the more potent corticosteroids, such effects appear to be mild and – in the context of HPA axis suppression – reversible when they are used for limited periods.

      Once a person can get past steroid phobia and appreciate that the benefits are far greater than the risks (and certainly more beneficial than the risks of putting children through TSW), it’s an easy decision to apply topical steroids for maintenance. What other treatment offers such low-risks while nearly eliminating the pain and suffering of eczema – right from the start? There are none.

      Even one of the most well-known and ardent supporters of TSW, Dr. Mototsugu Fukaya, seems to regard using topical steroids in this manner as acceptable. On his own blog, he writes, “I never advocate that all TS users should abandon them. I am not anti-steroid fundamentalist. What I am persisting here is only that some of them are really suffering from TSA. Both dermatologists and patients could use TS more safely without anxiety after studying TSA well. Patients need dermatologists with enough knowledge about TSA. Under such dermatologists steroid-phobic patients could resume to apply TS to their eczema without fear, I believe.”

      In a separate post, he addresses this issue yet again.

      “During early times of withdrawal it is surely hard to tolerate but what you should do is only tolerating it. But after enough time has passed and your eczema has changed to usual atopic dermatitis, you should do other efforts. Detecting and avoiding any stimuli to your skin. It is easy to say but difficult to carry out. But it surely is the wisest policy.

      At that time you can even resume topical steroids which you must have thought you would never use again in your life. You might feel a humiliation but they would really work. For the better quality of life you can utilize them. What you are requested is only the care not to be addicted again.”

      For “better quality of life”? That’s exactly what my son has now.

      Reply
  2. Kila
    Kila says:

    Jeff I have a question for you…. after patients heal their eczema through Dr. Aron’s approach, do they have less sensitivities to foods? How long has a patient been steroid free after they taper off the steroids?

    Reply
    • Jeff Kastner
      Jeff Kastner says:

      Hi Kila,
      As for being “steroid free”, most parents no longer choose that option because they no longer have steroid phobia (check out my next post in regards to this). The “maintenance” period for Dr. Aron’s patients differs greatly. In the case of my son, we’ve had to apply the steroid one weekend in the last 3 months. Some parents apply it much as once or twice a week. That’s an absurdly small amount of steroid on the skin, however, and poses an extremely low risk. This issue is talked about often, as it’s a genuine concern for a lot of people who hear so many negative things about topical steroids on random websites these days, but Dr. Aron and the majority of all doctors emphasize the safety of these drugs over and over again. When they are prescribed and used correctly, there is rarely ever anything to worry about.

      Food sensitivity is one of the best “side effects” of Dr. Aron’s treatment and certainly one I didn’t expect when I started the treatment late in 2013. The Facebook group for Dr. Aron didn’t exist at the time so I had no idea if it would work and was amazed at how well the treatment worked and how quickly. Whereas I had always read that eczema must be treated from the inside-out, it soon became clear that addressing the skin issue cleared up many of the internal problems. All the foods that were previously triggers for my son’s eczema were no longer problems. This is pretty consistent across the board for Dr. Aron’s patients. My son can now consume all foods with food colorings whereas before, they were always a trigger food. He has always been allergic to peanuts and that still remains.

      Here are three responses to the same question that was recently posed on the Dr. Aron Facebook group:

      Our boy was having bigger allergic responses each time he was tested as his AE was worsening each visit to allergist. Anaphylactic to peanuts, eggs worsening, more and more allergens being identified HOWEVER this no longer seems to be the case since Dr Aron’s treatment and the fantastic improvement in his skin health, wheat has been reintroduced with no response noted.

      My daughters was allergic to wheat eggs nuts and fish She then became so sensitive that she could not have dairy soya tomatoes corn most of her free from foods she started to react to, most foods started to affect herSince starting Dr arons treatment we have introduced dairy corn and her free from foods back in. She still avoids egg nuts wheat fish. She can have egg in baked food. Her eczema is well maintained and her actual triggers have become much more obvious. I now can tell after years of testing and avoiding what she is actually allergic to.

      My kids can now eat anything that isn’t a known allergen to them, ie peanuts. Food rarely triggers them now.

      Be sure to check out Dr. Aron’s Facebook if you want to get a lot more responses to your questions. They’re great questions that many people ask about.

      Reply
  3. Tessmnhm
    Tessmnhm says:

    Such an informative article, thank you so much! I joined ITSAN almost a year ago when a friend told me she thought my daughter’s eczema might actually be topical steroid addiction (my friend was, at the time, in TSW). ITSAN is a scary place, and I always felt that the information was so one-sided. This article presents ‘the other side’ of TSW so well. I hope other people who were worried about TSW like I was find this website, as well as any and all information about Dr. Aron they possibly can (I contacted him months ago and he has completely changed my daughter’s life–perfect skin with hardly any medication now). There’s so much great stuff to read here, and it doesn’t feel like it’s struggling to back itself up with sound research like ITSAN does. Thanks again!

    Reply
  4. Ann McCartney Lauchlan
    Ann McCartney Lauchlan says:

    So happy all has turned out well for you and you daughter, I note there seems to be only children mentioned in all I read on Etsin, I have had excema all my life and now 75years old , there has to be others like me, were are their comments? I note some older people make comments on other Web sites , I keep hoping some will tell of their experience. Please let me know how the oldies are managing theit AE.
    I have used Topal Steroids since 1958. As a child I spent many months in hospital. Had had litthe relief in most of my life. Now into 10 month or withdrawal and just bgonning to felt a little better.I write this for the benefit of the elderly.I cannot not be alone in this..
    ,

    Reply
  5. Mark
    Mark says:

    Great article. I bought into the Itsan voodoo and suffered for over 4 years, all the while being promised I would heal in the end. I posted on their TSW Facebook forum quite frequently and only heard of Dr. Aron in the TSW group, as they often speak poorly of him and attack him. After about the 10th time, I decided to see what all the fuss was about. I joined the Dr. Aron Facebook group and saw some pretty spectacular results on a daily basis. It took me a while to let go of my fear and trust this process. I’m 2 months in now and my life is completely changed. My skin feels like never before and I am no longer depressed and in pain. I’m pissed at myself for allowing myself to believe the Itsan lie for so long. I wasted a lot of time there. I did meet some very nice people and forged some positive online friendships so I can at least take that with me as I move forward with my life.

    My advice to anyone in TSW is to stop putting yourself through it. It’s a sham and it’s a lot of life wasted for no good reason. Thank you to Dr. Aron and all the hard working people spreading the word.

    Reply

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