From TSW to Living Life Again

TSW is a painful process that is both poorly documented and evaluated. The evidence that it works is minimal, if it exists at all. While the vast majority of medical professionals do not believe in TSW, the internet is rife with reports that ceasing all use of topical steroids can have a beneficial effect. While the jury is still out on this hypothesis, there are hundreds of people who are now reporting that even after years of topical steroid withdrawal, their symptoms and pain only increased while all aspects of increased health benefit decreased. Please be aware that topical steroid withdrawal lacks the scrutiny and support of all science that laymen purport as evidence of the condition. The haphazard approach to TSW can lead to massive amounts of inflammation in the body and inflammation is largely responsible for the vast majority of health issues that occur in the body. The following video highlights a large number of individuals who engaged in the painful process of TSW and ultimately found a safer alternative to TSW, allowing the body to heal in a pain-free manner, respective of good health and the many benefits that accompany it – all while ridding the body of atopic eczema and the associated redness that many believe to be the result of topical steroid use.

girl healing in the sun

Healing Naturally vs Topical Steroids

You don’t need to suffer through topical steroid withdrawal (TSW). There are hundreds of people in the Dr. Aron Facebook group who tried TSW first. It didn’t work and they were later cured of it on the Aron Regime. RSS doesn’t exist when using topical steroids (TS) as Dr. Aron prescribes. TSW groups attempt to convince everyone they need to suffer and it’s the only way to heal. They post inspirational suffering quotes and glorify the entire process of suffering. It’s unnecessary. There are hundreds of blogs and posts from people who were in the TSW groups first.. with full RSS symptoms, red sleeves, burning, hot skin immediately following cessation of steroids, etc.  Not a single person has RSS symptoms now. I personally believe it’s a completely made up condition (some, such as the NEA call it highly unlikely but possible)  – and I base this on research as well as personal experience. Very few doctors or health “professionals” think steroid addiction is real and in promoting it, they don’t consider the alternative. I’m uncertain as to why anyone would want to trust a doctor who refuses to consider all possibilities and the one doctor who ardently preaches this seems to have a motive all his own. It is unfortunate.

Why do all Dr. Aron patients (in a group of nearly 10,000 people – many of which believed they too had RSS before treatment) get cured of RSS symptoms? Steroids are not the enemy. They are being prescribed wrong conventionally and this leads to inflammation being reduced (as TS are supposed to do) and the bacterial element being more easily spread. This creates the “red” that is so common post TS treatment, when the inflammation returns. We see it on a daily basis in the Dr. Aron group – and we see it cured and gone on a daily basis, with only the underlying eczema left (of which there is no cure but is very easily manageable at this point). I have witnessed this first hand with a patient who became worse under conventional steroid usage and thrived under the care of Dr. Aron. He rarely has to use anything on his skin anymore. I completely understand why TSW advocates believe TS are the problem, as the role of bacteria in eczema wasn’t fully understood at the time the skin appeared to be getting worse after using TS, so a couple doctors took their best guess. They just happen to be wrong and they refuse to see what is happening right in front of them. One doctor in particular issued a lot of research papers before the Aron Regime became popularized so of course, he stands to look the fool (in his mind) if he changes his opinion. He’s more keen on feeling like a hero and I understand that.

I understand the desire to “heal naturally” and as an adult, I commend you on your choice if you can achieve that. The promise of this is alluring and it sounds like the healthiest version of you but you should know that some people simply cannot heal naturally – and that in the case of children, who are still developing in so many ways, there are often many more risks to not using prescribed medications. Sometimes, medicine is simply the best options, despite the many blogger “experts” who try and warn you otherwise.

There are many different skin types. There are people over 10 years in to TSW, believing they are addicted and suffering for no reason all of this time because of misinformation being spread by a single doctor who simply based his conclusions (and his beliefs still today) on what he saw when prescribing TS conventionally. There are kids I’ve seen subjected to TSW for 3 and 4 years (and still going) despite early claims that it was supposed to last only a fraction of time as was the TS use. What happened to those percentages? Why are so many kids not healing and being forced to suffer so long? Some kids have been in TSW twice as long as they used TS. That’s absurd. Some people will suffer the rest of their lives for this belief that is nothing more than propaganda. In economics, it’s called the Sunk Cost Fallacy and it’s what keeps people continuing with TSW, despite enduring constant pain and having no quality of life. Consider the emotional/social impact of TSW on a child and consider the physical processes that are impeded by allowing the amount of suffering that has become acceptable as part of the TSW culture. TSW groups are full or horror stories on a daily basis and they become the norm. People get so used to seeing those stories of suffering that they accept the associated pain as “part of the healing process”. They have created a culture where pain and suffering are glorified.

Yes, some people will heal naturally. It is the nature of skin that in time, it will heal for many people – but it is never with all. When people see these healing stories from others going through TSW, they get excited and offer it as proof that TSW works but quite simply, correlation does not imply causation. That’s rarely considered in the groups and should always be. These healing stories spurn people on but this in no way means the next person will see the same results. Quite factually, there are far less people being healed in TSW groups that reports of being healed.  “Stay the course” is all that is offered.

Some people need topical steroids to treat eczema. When prescribed and used correctly (as with the the Aron Regime), they are perfectly safe and highly effective. There are thousands of people using TS in the Dr. Aron group.  There has never been a single reported side-effect of TS usage on the Aron Regime. Remarkable. Clearly, TS aren’t the devils they are made out to be. Roll the dice and cross your fingers if you’re going to subject you or a loved one to TSW – or simply don’t believe the hype. Understand that “healing naturally” doesn’t guarantee healing. In a Risk vs Benefit analysis (that is fairly evaluated), Dr. Aron wins far more often. There is much to be said for quality of life – especially when it comes to a child suffering with a debilitative condition and in need of relief.

an illustration of 4 people trying different methods for red skin syndrome

Dr. Aron vs Topical Steroid Withdrawal (TSW)

Eczema can be a brutal and almost unbearable skin condition. The first response to treating the itching and associated pain is typically a combination of self-care techniques, home remedies, diet and medical therapies. In more severe cases, the next step often involves a prescription for topical steroids.

Topical steroids (TS) are most often prescribed every few weeks for an average period of 7 to 10 days. This reduces the inflammation and when the steroid therapy is complete, the inflammation quickly returns – and with it, a worsening of the red skin that is signature of severe eczema.

At this point, individuals (who we will collectively refer to as “patients” from this point forward) become more disenchanted with each application of conventional steroid therapy. Simply put, the method is ineffective in treating eczema and the resulting skin often looks worse than before the topical steroid treatment began.

Patients begin to look for solutions on their own and this had led to a hot topic debate between two modern approaches that appear to be helping where modern medicine is failing – but are they helping? Are these solutions viable? Are there risks involved? What are the benefits? This article attempts to present a fact-based comparison, regarding the pros and cons of topical steroid withdrawal and the Aron Regime in resolving red skin syndrome.

TSW

Topical Steroid Withdrawal (TSW) stems from the belief that the skin can become “addicted” to steroids. When the skin worsens after a round of steroids, it is believed that the body has become dependent on TS and this explains why a patient must keep using greater amounts of TS to achieve the same effect. As the body is now addicted, the only solution is to quit “cold turkey” – as advised by proponents of TSW.

TSW was popularized by Mototsugu Fukaya, MD JDA Certified Dermatologist, who has since retired from the field of Dermatology. Dr. Fukaya acknowledged the appearance of increasingly red skin after using TS that was becoming more commonplace among patients using TS on a routine basis. He saw the resulting red skin as an iatrogenic condition (illness caused by medical treatment) and he advised that the discontinuation of TS would eventually bring the skin to it’s former state.

Red Skin Syndrome

The red skin that results from topical steroid use has just this decade been coined “red skin syndrome” or RSS. It is characterized by red, inflamed skin that occurs after the cessation of topical steroid use. RSS is separate and distinct of atopic eczema. The process of curing RSS may or may not influence eczema.

Dr. Aron

Dr. Aron has been treating Atopic Eczema for the last four decades with a treatment plan popularly known as the “Aron Regime”. He is a Pediatric Dermatologist, based in South Africa and he is insistent that the conventional approach to treating eczema is a failure. His concern is that treating eczema only with steroids will simply reduce inflammation temporarily but it will do nothing to help heal the skin. Once the topical steroids are discontinued, the eczema will quickly return and often, it will be worse. Why?

Dr. Aron offers a published medical study as evidence that 90% of chronic eczema sufferers carry Staphylococcus aureus (staph) bacteria on their skin (and he believes the incidence to be higher). Topical steroids have no effect on bacterial infection so why are they all that is conventionally prescribed when a patient is suffering with eczema?

It gets worse. When TS are applied to the skin, they will most certainly reduce inflammation but as patients are also typically advised to moisturize during this period, this creates the perfect “breeding ground” for staph bacteria to spread. When the steroid treatment is complete, the skin can be in a worse state than just days before. Dr. Aron states that RSS isn’t an iatrogenic condition at all. It’s a condition that is perpetuated by the use of topical steroids alone, as they make conditions more favorable for massive amounts of bacteria to spread due to the reduced skin inflammation. This explains why TS are quickly blamed for the resulting red skin after treatment.

Dr. Aron believes that an antibiotic must be used in conjunction with the TS and longer than 10 days (conventionally prescribed) to heal eczematic/red skin as Staphylococcus aureus, associated with eczema, is a more severe bacterial infection than is currently recognized by doctors. Just as strep throat can worsen if an antibiotic course is not completed, Staphylococcus aureus can worsen when the prescribing dose is not sufficient. It is interesting to note that Dr. Aron’s method cures RSS in nearly every case, leaving only the underlying eczema to deal with. This gives supporting evidence to RSS not being iatrogenic, but bacterial in nature. Indeed, if it were not the case, it would be inexplicable that the Aron Regime would have such a high success rate in curing RSS, as the Aron Regime will typically increase TS applications in the beginning and then taper this frequency over the next few weeks/months until little or no TS is needed to manage eczema.

While TSW advocates attribute RSS to a reaction of using TS, Dr. Aron views RSS as a sign of untreated bacterial infection. TSW advocates often acknowledge the existence of staph but deny the role of staph as the primary culprit in dealing with RSS. It’s also of interest to note that Dr. Aron doesn’t make any claims regarding RSS as it’s simply not an issue on the Aron Regime. His treatment is specifically for atopic eczema and he regards the curing of RSS as a simple by-product to his treatment.

Why the Debate?

Atopic eczema affects countless individuals all over the world. An improper diagnosis can mean years of extended suffering and since children have the highest incidence of eczema, the choice of treatment can prolong suffering in children by months and years.

TSW has also had instances of children dying while going through the process. TSW advocates argue that the resulting deaths were not directly correlated to TSW but in every case, the child had deteriorating health conditions that ultimately led to loss of life. There are news reported cases of close calls, deaths and other stories that don’t get reported. The latest story was a child who passed away just this summer. His Mother promptly left a Facebook TSW group and asked anyone with information correlating TSW and death to please message her. The fact that there are even arguments about it should have patients questioning TSW – and advocates questioning their decision to recommend TSW to others who are suffering an already debilitating skin condition.

Alternatively, the side effects of topical steroids are often promoted by TSW advocates, in defense of using TSW as alternative therapy. They believe there is a greater risk of side effects from TS than TSW. However, this uncommon view is not shared by most doctors and there is much evidence that TS have no side effects when prescribed and used correctly.

“It’s very important to continue medical treatment that’s been prescribed and speak to the doctor who’s prescribed that before you make a decision,”
“Alternative therapy doesn’t have much place in the treatment of dermatological conditions like eczema. Following proven, known safe methods of treatment is the way to go.”
~The chair of the Australian Medical Association’s Council of General Practice, Dr Brian Morton

What Are the Risks?

Topical steroids always carry “potential” side effects and antibiotic resistance is a community concern however, it is worth noting that Dr. Aron has treated thousands of patients suffering from both eczema and RSS and there has never been a single report of systemic/local side effects from the use of TS. Likewise, there has never been an incidence of antibiotic resistance developing from the Aron Regime.

Topical steroid withdrawal advocates typically oppose doctor prescribed medications while enduring TSW and this often leads to increasing health risks. Suffering is increased and this means the body’s metabolic processes will slow down. Infection is not typically dealt with. Enlarged lymph nodes (a sign of infection) are common throughout TSW while they tend to disappear completely on the Aron Regime.

There are also psychological implications to going through TSW, including many cases of severe depression and social isolation/alienation.

HPA Axis Suppression is another concern. The body regulates the amount of naturally produced steroids through the Hypothalamus-Pituitary-Adrenal (HPA) Axis. TS get absorbed into the skin, and can also be absorbed into the blood stream. If too much gets absorbed, it will “fool” the HPA Axis into thinking the body is producing too many steroids. The production of steroids will be reduced accordingly. This explains why the advice to stop steroids “cold turkey” can cause issues for many patients who immediately cease using steroids. Oddly, this advice is still given on many internet forums.

HPA Axis Suppression is commonly diagnosed for patients going through TSW while none of Dr. Aron’s patients see this. It should come as no surprise that HPA Axis Suppression and TSW share many of the same symptoms.

“The most feared complication of abrupt withdrawal of prolonged or high-dose corticosteroid therapy is suppression of the HPA axis, which leads to secondary adrenal insufficiency. The symptomology of chronic adrenal insufficiency is characterized by anorexia, nausea, vomiting, abdominal pain, weakness, tiredness, asthenia, prostration, myalgia, arthralgia, weight loss, postural hypotension, somnolence and depression.”

From the Book ‘Phobias: The Psychology of Irrational Fear’, by Randi E. McCabe Ph.D

ACTH stimulation, A.M. plasma cortisol, and urinary free-cortisol tests can all detect HPA Axis Suppression and ensure that it is not a concern.

What Does the Research Say?

A Random Controlled Trial (RCT) is the gold standard in medical research.

There is not a single RCT that supports Topical Steroid Addiction. There is strong evidence that the discontinuation of topical steroids will ultimately cure the skin of red skin syndrome but the “wait time” will do nothing to help with the skin condition of eczema during this period. It is unlikely that a RCT will be seen in the future as this would require that a sample group be allowed to suffer for a period of months to several years.

Is Topical Steroid Addiction an actual clinical condition? The National Eczema Association created a task force to look into this after an increasing amount of patient concerns. After several months of investigation into Topical Steroid Addiction and the resulting RSS, they published their finding here and in conclusion, it is stated, “TCS withdrawal is likely a distinct clinical adverse effect of TCS misuse. Patients and providers should be aware of its clinical presentation and risk factors.”

This doesn’t necessarily mean that a patient is misusing TS – as “misuse” can happen when TS are not properly prescribed. Once again, it seems that the system of conventionally prescribed TS are failing many patients.

The Aron Regime does not offer a RCT as evidence either. While Dr. Aron has successfully used this treatment over 40 years, it has just recently become “mainstream” and it is very likely that a RCT will be conducted in the next decade as hundreds of doctors have now adopted this treatment program in the last few years. Professor Peter Lio of Northwestern University ( Chicago Integrative Eczema Center ) has been following the AR precepts and has expressed interest in performing a trial at some point . Dr Carol Hlela ( Head of Pediatric Dermatology ) at Red Cross Children’s Hospital in Cape Town will be doing a trial with Dr. Aron in 2016, with the prospect of presenting a paper at the South Africa Dermatology Congress in August 2016. An academic analysis of the AR is in the pipeline. Finally, on this front, there is a significant chance that an Aron Regime clinic will be opened in London ( UK ) in February 2016 and this will enable Dr. Aron to start training doctors in the finer points of management of Atopic Eczema as well as the straightforward aspect of compounding in an appropriate way.

In continuing to look at the research, is there danger is this newer approach?

There is a published medical study in the Journal of Pediatric Dermatology with a RCT that supports extended, daily use of TS as a safe and effective treatment, as prescribed in the early stages of the Aron Regime. In this particular study, 70 out of 92 children were given TS daily for a period of 10 months and enough that they were virtually kept free of eczema. Both their treated and untreated skin were evaluated with dermoscopy, a technique which utilizes a mini-microscope to search for even the most subtle signs of TCS side effects with a result of no skin thinning in any child.

We conclude that routine, appropriate, long-term use of TCS (Topical Corticosteroids) in children with dermatitis does not cause skin atrophy. These data do not support the widely held belief that routine use of TCS will “thin the skin. Parents, pharmacists, and health practitioners should be confident about the safety of using this treatment.”

Length of Treatment

Topical steroid withdrawal takes months to years to cure red skin syndrome while the Aron Regime typically cures this condition in days to weeks. TSW does not help to improve the underlying skin condition so eczema may still be a problem of the same magnitude after TSW is completed. The Aron Regime substantially improves the condition and results are typically seen in the first few days.

After RSS is cured, the treatment of TS may again be resumed in both TSW and with the Aron Regime to manage ongoing eczema. For many, TS may be eliminated and patients may choose to treat naturally – if the severity of eczema allows for this.

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.
~Dr. Mototsugu Fukaya (TSW advocate)

Quality of Life

TSW decreases quality of life substantially, usually for many months and years. It is a long-suffering, painful process and some individuals are several years in and still waiting to be healed. The Aron Regime improves quality of life almost instantly. The skin shows significant signs of improvement within hours and the patient is often living a normal quality of life again in the first few weeks.

illustration showing how to get from point a to point b and get rid of RSS

The Bottom Line

Getting to “Point B” is the goal. Both the Aron Regime and TSW will get a patient to this point. Once there, there is no more steroid withdrawal/addiction or RSS. Using topical steroids, at Point B, is completely optional for both the Aron Regime and TSW.  Regardless of the path in getting there, eczema will go into remission for some and others will need to address eczematic challenges going forward.  There is no cure for eczema so neither approach will cure the underlying eczema, however, the Aron Regime will positively affect the underlying eczema while curing RSS. TSW will eventually cure RSS but it has no effect on eczema – so patients must typically make an “educated guess” where the RSS ends and the eczema begins. There is no current approach that can promise perfect skin at the end and there are varying degrees of eczema that will always require less or more maintenance.

There is no evidence that the body will heal “better” by discontinuing the use of prescribed medications. Many illnesses require doctor intervention and for severe cases of atopic eczema, this certainly appears to be true. TSW is not a complementary therapy. It is an alternative therapy, meaning that there is no scientific evidence that it works and you are being asked to forego professional medical advice on the chance that it appears to have worked for someone else. TSW is nearly always “self-diagnosed” and rarely supported by medical doctors.

TSW does appear to be a real condition for a very small percentage of the population and evidence suggests that it only exists in adults who have used extreme amounts of TS for several decades. The idea that children need to be put through TSW is a concept founded entirely upon credulity. This is the opinion of the vast majority of all doctors and the National Eczema Association.

The strongest argument for using TS to manage atopic eczema lies in understanding that they can provide the fastest and greatest possible healing (along with relief) and that any possible side-effect can be monitored and detected early on – allowing you and your doctor to change direction if necessary. By making yourself aware of the risks, you can eliminate every one and achieve a far better quality of life and healing – without fear of getting RSS or experiencing any ongoing side effects of TS.

As the Aron Regime continues to influence and affect how the condition of atopic eczema is treated, the etiology of RSS will be better understood, the condition of RSS marginalized and likely eliminated altogether. It is a fallacy to believe that healing “naturally” is not without many side effects and risks. There are risks to any choice of therapy. It is advised that patients consider “Risk vs Benefit”, while working with a trained medical doctor, in treating the skin condition of both RSS and atopic eczema.

Visit the Dr. Aron Facebook Discussion page to learn more.

correlation causation funny

Red Skin Syndrome – Correlation Does Not Imply Causation

It is interesting to note that all of the primary Facebook groups that were created for the support and treatment of eczema are now instigating new rules that have banned the topic of RSS (red skin syndrome) and steroid withdrawal. Eczema Parents is probably the largest online eczema community and the recently updated rules include the following snippet:

After careful consideration it has been decided that there will be no discussion about topical steroid addiction/topical steroid withdrawal or red skin syndrome, on the group, at all. Topical steroid withdrawal is not a treatment for eczema, and the subject has been the cause of bickering and arguments, and it has all become too much. Any posts will be deleted without notice, and members are at risk of being removed from the group.

The biggest takeaway here is the line that reads “Topical steroid withdrawal is not a treatment for eczema” and it’s very important for parents of children with severe eczema to understand. 

RSS is a real phenomenon in that red skin, separate from eczema, is often the result of the conventional steroid approach to eczema. In short, the conventional approach is a 7 to 10 day cycle of steroids (oral and/or topical) prescribed by a physician for the treatment of eczema. This treatment typically only works during this 7 to 10 day window and then the skin flares with eczema again. Over time, the skin builds an immunity to this approach and more steroids are needed to achieve the same results. For some, this results in additional red skin from the steroid usage and increased pain from the already debilitating condition of eczema. 

The problem with this situation is not in acknowledging that a reaction can occur from topical steroids. The problem is the understanding of what is occurring and more importantly, how to address it. There is a group that has long advocated that immediate cessation from all steroids is the only solution, at the point of developing red skin from the use of topical steroids. Unfortunately, this approach often has the most dire of consequences.

The underlying eczema is not affected by steroid withdrawal. If a child was suffering before, the condition is about to get much worse. TSW not only encourages pain and suffering in a small child having an already difficult time but there are many health implications. 

Anti-steroid groups do a terrible job of informing parents that steroid withdrawal has no effect on the underlying eczema, more often spreading messages of hope, that such an approach is the key to ending the suffering of red, inflamed skin. Desperate parents often become victims in this house of cards – later asking why their child has suffered so severely for months and years without an end in sight? 

“But it worked for my child!”

Testimonials make for the most powerful of arguments but it’s important to understand that correlation does not imply causation.  I recently received an email that stated “I know withdrawal works because it worked for my child!”. Did it? How do you really know? Why did the eczema exist before topical steroids were ever used? Why would using them for a prolonged period and then stopping suddenly heal the eczema that existed long before the topical steroid usage? 

Eczema is a condition that has always seen a percentage get better with time – with our without the addition of using anything on the skin. This percentage is what “sells” people on TSW (topical steroid withdrawal). The pretty “after” pictures and the powerful assurances that “this is the way” can be very persuading to individuals feeling great desperation but there are some very important questions that every parent considering withdrawal should be asking. 

It’s also worth looking at the entire spectrum of eczema sufferers. Some people deal with very mild eczema that requires no topical steroid intervention at all. Some deal with the most severe cases imaginable – and there are many varying degrees in between. How many “mild” cases have existed whereby an individual applied a small amount of steroid cream, witnessed a reaction of some sort, stopped using and the eczema finally cleared up on it’s own – an outcome that was destined to happen anyway? These are the stories that add to the myth of treating eczema with steroid withdrawal. The experiences seem very real to the person who stops using a steroid cream and sees a positive change in the skin but indeed, correlation does not imply causation.

TSW FAQs

Q. “Will TSW heal the eczema too?”
A. No. Withdrawal from steroids does not positively affect eczema. It can only negatively affect it, causing greater inflammation and disruption to the skin. This is the primary reason that the conversation is no longer being allowed in so many eczema groups. There is no cure for eczema. There is zero evidence that steroid withdrawal positively affects eczema in any way. TSW is not an eczema treatment. It is only for red skin syndrome. 

Q. Why does withdrawal not work for everyone? 
A. TSW may, in fact, work for curing the red skin associated with conventional steroid use but even that is unnecessary (see below). A very real problem in dealing with withdrawal is self-determining (because very few doctors support TSW) the line of where the red skin of topical steroids ends and the inflamed red skin of severe eczema begins. Sadly, there are many people who have been going through TSW for months, and even years, still waiting to see the finish line and they are simply dealing with severe eczema, which is unaffected by TSW. Indeed… if TSW works, why doesn’t isn’t it working for everyone? 

Q. Is there another alternative for eczema and/or red skin syndrome?
A. Yes! Red skin syndrome was the new buzz word in the first decade of the 21st century because little was known about it and the only solution seemed to be giving up all topical steroids. Though a long and painful journey, removing all topical steroids will eventually (and obviously) remove the red skin caused by topical steroids (but this still leaves the problem of severe eczema). It hasn’t been until the second decade of this century that the world’s foremost expert on eczema treatment has gained attention. Dr. Richard Aron’s treatment has an astounding rate of success in treating eczema and relieving the associated itch and pain. Visit Dr. Aron online or if you  have a Facebook account, visit the Dr. Aron Treatment Discussion Group and witness the results for yourself. Dr. Aron is treating thousands of patients in the group and despite the severity of eczema, the associated red skin that is sometimes the result of conventional steroid treatment, is no more for anyone. There are files on the Dr. Aron Facebook page that explain his view on red skin syndrome, how it is commonly misdiagnosed and why his treatment works to very quickly resolve an affliction that many are needlessly suffering for. 

If you’re a parent looking into different treatments for the condition of atopic eczema, the overload of online information and options can be very confusing but please be aware that steroid withdrawal is only likely to make an already brutally painful condition even more difficult. 

man suffering from steroid withdrawal

Dr. Makise on Steroid Addiction

I’m fortunate. I have a healthy little boy with beautiful skin. It wasn’t always the case though. My son suffered through 5 1/2 years of severe pain, itching and discomfort with the debilitating skin condition known as eczema. As a parent, I felt completely helpless and wondered if I would ever be able to help my son? I stumbled on Dr. Aron while Googling for answers one day and since that first week of starting treatment, my son did a 180 and got his life back – for good. He’ll be 7 years old this summer and he’s never again suffered with eczema. 

My son had severely red skin from topical steroid use. It always worsened right after using them. Dr. Aron assured me that his treatment would address this known issue. He was right. Regardless of what is sometimes written in personal blogs online or purported by websites advocating against the use of steroids, RSS is very easy to solve for almost everyone experiencing it. Dr. Aron has figured it out – and he’s helped thousands overcome this problem. He’s doing it right now. There are hundreds of children (and several adults) in the Dr. Aron Facebook group experiencing the relief from red skin syndrome. RSS, as it is most commonly “sold” today, is a severe “addiction” that must be overcome by withdrawing from steroids. In truth, it is simply the body’s exaggerated response to abruptly stopping a topical steroid.

Interestingly enough, that red skin is not caused by a steroid addiction, is also the view of my personal doctor and my son’s pediatrician, locally where I live. It is in fact, the consensus among the majority of all doctors in the U.S. Even the National Eczema Association states that true steroid addiction is unlikely and rare. This isn’t to say that there’s not a problem with the way steroids are often prescribed and/or administered. The standard for treatment simply needs to be looked at and updated. I personally believe this will happen one day. Dr. Aron’s approach to eczema reminds me much of the challenges Barry Marshall endured while getting the medical world to acknowledge his treatment for stomach ulcers. There’s every chance we may be looking at a future Nobel Prize winner in Dr. Aron. His eczema treatment is second to none and the word keeps spreading. 

I’ve often considered how absurd it was that I had to turn to a doctor living on the other side of the world (South Africa) so that my son could find permanent relief and healing from eczema.  On one night in particular, this had me wondering what the dominant approach to treating eczema was in other countries? Was it more successful? Did other world doctors view steroid addiction and withdrawal in the same way as US doctors? Did they prescribe steroids in a different manner? 

Tadahiro MakisaI was back to the Google machine. I came across Tadahiro Makise, MD, a Japanese doctor who was slated as “cutting edge” for the treatment of eczema and indeed, his specialty for the last two decades has been atopic eczema. Several internet profiles made him out to be a naturalist so I half expected him to be approving of TSW but if he could prove that TSW could affect eczema in any way, shape or form, I would gladly listen.  

What follows is the exchange we had during several emails. I got the feeling that Dr. Makise could have wrote for days, telling of his experiences with treating atopic eczema. He was generous with his words and it became obvious that he was passionate about his work. 

Q. How do you feel about itsan and their advocacy to never use topical steroids? Will abstaining from all steroids (TSW) ultimately work in to help with eczema in the end? 
—- It is a painful ordeal and it is very dangerous, too. I’m against such treatment.
Q. What are the mechanisms by which abstaining from any steroids might ultimately clear the skin?
—- I don’t think abstaining from any steroids might ultimately clear the skin. I recommend my patients to apply steroidal ointments without hesitation. Later I’ll explain to you why — probably the next week — as I don’t have time now. Please wait for a while.

Six days later, the conversation continued. 

Atopic dermatitis (AD) is caused by various reasons. Examples of causes are:— allergy to specific substances, junk foods, unbalanced nutrition, variation of filaggrin gene, mental stress, etc. But in any case, AD is caused from the inside of our body. It is not a skin disease. For example, Candida albicans (athlete’s foot) and Herpes is a skin disease; but AD is the symptom of an internal problem. Most dermatologists only see the skin and they don’t treat AD as an internal disease. I’m not a dermatologist but a general physician practicing in a busy Japanese town of Osaka and I see AD as an internal disease.

For the past 20 years, I have treated more than 50,000 AD patients at my clinic and I see the number of AD patients increase yearly. The majority of my AD patients have previously visited dermatologists and they understand steroidal ointments cannot solve their problem but are forced to continuously use steroidal ointments. Over time their steroid dosage was getting stronger and stronger and the patients realized the effects of continual steroid treatment to their body is bad. Radical “anti-steroid” therapies have emerged from patients who abstain from steroid treatment. I understand this social phenomenon very well but I recommend my patients to use steroidal ointments without hesitation.

You write ;

[How do you feel about itsan and their advocacy to never use topical steroids? Will abstaining from all steroids (TSW) ultimately work in to help with eczema in the end?]

—- ITSAN is right in the following two points.

1) Steroidal ointments stimulate the production of stratum corneum chymotryptic enzyme (SCCE) that breaks the barrier of the skin, therefore, abstaining from steroids can contribute to the cure of AD.

2) Some patients have allergy to some steroids.

Yes, they are right about these two points to some degree. But they don’t understand the below.

1) Any medicines has a two-edged blade. Steroidal ointment does have merit and demerit. But the benefit of steroidal ointments ( = anti-inflammation effect) surpasses its drawback. AD is ” dermatitis”. “— titis” is inflammation. If the skin barrier is broken, there are many methods to moisturize the skin. But how to suppress inflammation? Besides steroidal ointments, I don’t know a substance that suppresses inflammation as effectively as steroidal ointments.

2) I had a few patients who are allergic to steroidal ointments.

For example; One has allergy to prednisolone valerate (it is contained, for example, in Lidomex Ointment), — Patient A – and the other is allergic to diflucortolone valerate (Texmeten Ointment) — Patient B

If Patient A uses Texmeten Ointment, their skin improved very much. If Patient B uses Lidomex Ointment, their skin improved very much. So, it is not possible to generalize that all steroidal ointments cause allergy. The majority of patients are free from allergy caused by any steroidal ointments. Some researchers claim that around 20 % of AD patients are allergic to steroidal ointments but this figure is exaggerated. From my experience after treating more than 50,000 AD patients, it would be at most 2 to 3 %.

I’m against especially quitting “Cold Turkey”. Why? The reason is as follows:

One of the most dangerous sudden withdrawal effects of steroidal ointments is “cataract”. Patients develop cataract during the period of sudden withdrawal of steroid. Not often, but some, even very young patients, develop it. Doctors don’t know yet why sudden withdrawal of steroid hormone causes cataract.

The origin of the skin is ectoderm and the origin of the lens is also ectoderm. The sudden flare up of inflammation of the skin might have some connections with lens of the eyes, because their origin is the same. Therefore, I guess the sudden flare up of the inflammation of the skin should cause some neurological problems, too, because the origin of neurons is ectoderm, too. Depression is one of the typical symptoms of sudden withdrawal effects of steroidal ointments.

As well if you suddenly stop steroidal ointments, a really painful rebound of itching and scratching will take place. Individuals will not be able to sleep, work, study, or go about their daily life. The worst part is you will not know when this painful ordeal will end which creates heavy mental stress. Patients will be like a passenger of a wrecked boat. They will not know when rescue will come and they will reach an island, all while losing food and water every day. This stress worsens AD symptoms much more. The extreme build-up of stress will further exacerbate their condition, making their situation even worse. Eventually, pigmentation will occur due to the prolonged inflammation, and finally the patient’s skin will harden beyond repair.

Almost 95% of the patients who attempt to withdraw from steroidal ointments give up and begin to use steroidal ointments again. During this painful rebound period, their skin condition got worse, and it takes much longer time for them to recover normal skin.

And what is the crucial point is, I would like to emphasize again, ” AD is not a skin disease, but caused from internal problem”. AD is an “Inside Out Disease”. Dermatologists don’t try to cure inside of the patients. When patients’ internal body improves, they can withdraw steroidal ointment naturally . As the internal problem improves, they will need less steroidal ointments and less, and less, and finally null —> finally reaching a complete withdrawal of steroidal ointment.

But on the contrary, complete withdrawal of steroidal ointments doesn’t cure the internal problem at all. As you write, “I don’t understand the mechanism of the curing effect of complete withdrawal of steroidal ointments”. You are perfectly right in this point. That’s why to improve the inside of the patients, I prescribe various combination of supplements, such as vitamins, minerals, and herbs, and healthy foods. But some dermatologists who advocate TSW don’t mention even one word to cure inside.

Then, one question arises. Why can some patients who do TSW be free from AD without taking any action to heal inside? There seem to be some reasons as follow;

1) They might change their eating habit —> more vegetables, less meats, more fish, less sweets. Consequently they cure inside.
2) Some of them really had allergy to a specific steroidal ointment. And avoiding any steroidal ointments leads to cure.
3) The eczema was due to fungus infection. For fungi infection, steroidal ointment are useless. Rather steroid worsens the infection.
4) The eczema and red skin were due to Seborrheic Dermatitis (SD). The cause of some SD is attributed to fungi infection, too.
5) Thanks to a specific mechanism which is similar to Short-Term Prednisolone Therapy (So-Called Steroid Rebound Therapy) in the treatment of Hepatitis B, they are cured.

OK, I’ll refute these reasons here.

1) Patients can change their eating habit at once without experiencing this painful ordeal. TSW is not necessary at all to change the meal habit.

2) If the patient seems to have allergy to a steroidal ointment, change it to another one. Not so difficult to find a steroidal ointment which suits the patient. It is not necessary for the patient to give up all steroidal ointments.

3) If fungi infection, use antifungal medication. This has nothing to do with TSW. It depends upon the careful observation of the doctors.

4) The same as fungi infection. What is important is the careful observation of the dermatologists. That’s all.

5) This is worth discussing. “Steroid Rebound Therapy” for hepatitis B requires very careful control and observation by doctors. Without them, it’s very dangerous therapy. The same is true of the treatment of AD by TSW, even if the same theory can be applied to TSW. And if the patients undergo TSW, they should be hospitalized. Otherwise TSW would be very dangerous.

At this moment, I don’t know if the mechanism of “Steroid Rebound Therapy” for hepatitis B can be applied to the treatment for AD by TSW or not. It would take a lot of time to verify it but I’ve never heard that those who advocate TSW argue this theme. Probably they are too much specialists of the skin to get to know the treatment for hepatitis B. (Recently “Steroid Rebound Therapy” for hepatitis B is getting obsolete because better treatment by interferon is going to be established). Personally I’m interested in this theme. But even if verified, actually who can stay in hospital for a half year for eczema?? Very few!! If they were dying of cancer, they would be staying in hospital even for a year. But just by $5 steroidal ointment the eczema is alleviated.

Recently medical science has become too much specialized to diverse fields. The contact between dermatologists and physicians are getting less and less and almost nothing. This is never good for general health. I treat not only skin diseases but also menopausal women, hypothyroidism, depression, prostate cancer, lumbago, ADHD (attention deficit hyperactivity disorder), to rheumatoid arthritis, etc, etc, at the same time at my extremely busy clinic. I don’t distinguish diseases by the category to which the diseases belong.

To prevent Ebola, scientists of virology don’t care about a very simple fact, because they specialize only in virus. They seem to be occupied in producing an effective vaccine. But the simple fact is that Ebola virus is transmitted through the skin. Why don’t they try to strengthen the texture of the human skin to prevent Ebola and why don’t they try to improve our immune system against the virus? There should be effective methods to stop its infectious power. Later I will discuss about it. If you have any further questions, please feel free to ask me.

I wrote one more email with questions, as I hadn’t yet asked Dr. Makise what he thought about red skin syndrome?

“Dr. Makise,
Would you comment on what is commonly known as Red Skin Syndrome? Almost all proponents of TSW say that severely red skin is a sure sign of steroid addiction.

When you see a patient with severely red skin, after taking steroids, what are your thoughts? I assume from your previous emails that you don’t believe this is steroid addiction or that TSW is necessary to restore the skin to health? “

First of all, “Red Skin Syndrome” is not an accurate medical term for diseases. We don’t find it in orthodox textbooks of dermatology — at least in the Japanese text books. I have one English textbook of dermatology, but I don’t find it in the book, either. Red Skin Syndrome is the word for symptoms — like stomach pain. Not a word for a disease. And for the word for the symptom of “Red Skin”, ” Erythroderma ” is appropriate. And several kinds of skin diseases cause Erythroderma

So, from the beginning, arguments between conventional doctors and TSW doctors seem to be confusing. “Steroid Addiction” is also not an accurate word. Two ambiguous words, ” Red Skin Syndrome” and ” Steroid Addiction” are being used among them. So, more confusing. This is my general impression.

The crucial point of this argument between conventional doctors and TSW doctors is “whether steroidal ointments cause dermatitis or they don’t cause dermatitis”. My opinion is that steroidal ointments don’t cause dermatitis. As I wrote, even if they cause dermatitis, very few. And it is not difficult to improve the dermatitis by changing the steroidal ointment to another steroidal ointment.

Whenever the patients withdraw any steroidal ointment abruptly after long use, of course, it causes rebound, and the skin gets red. This is not dermatitis caused by steroidal ointments themselves. This is due to quitting “Cold Turkey”. Any drugs, for example, cholesterol lowering drugs such as, what is called, statin dungs, cause “rebound”, too, if the patients stop taking the drug abruptly. I’m strongly against statin drug and I let my patients stop taking it, but not abruptly. They should stop it very gradually. Dermatologists should know any drugs can cause dangerous withdrawal phenomena, if abruptly stopped. Not only steroid, but any drugs.

[When you see a patient with severely red skin, after taking steroids, what are your thoughts?]

— I would like to know the true cause of the red skin. — Is the patient suffering from drug allergy, or atopic dermatitis (AD), or seborrheic dermatitis, or psoriasis, or malignant skin cancer (mainly lymphoma or leukemia), or etiology unknown (idiopathic)? And if they suffer from AD or psoriasis and they withdrew the steroidal ointments abruptly, I let them try a different steroidal ointment — usually the unique steroidal ointments that we produce at our clinic. I never recommend TSW. If they suffer from serous itch (often the itch is really abnormally serious), it might be onset of skin cancer such as Sézary syndrome or Mycosis fungoides and I let them go to university hospital to check thoroughly. If drug allergy, careful listening what drugs they have been taking solves their skin problem very easily — don’t take the drug!! If seborrheic dermatitis, change the steroidal ointments to anti fungus ointment. If contact dermatitis, try to find the substance that causes dermatitis, though not so easy to find it actually, I know well. Therefore, apply steroidal ointment to reduce the inflammation.

For AD patients and psoriasis patients, I recommend them to take the combination of several vitamins, minerals, and herbs to cure their inside while reducing inflammation on the outside. Although steroidal ointments are very necessary, they are mere symptomatic treatment. Steroidal ointments cannot cure the problems of their inside. Just like TSW cannot cure the problems of their inside.

I have some AD patients who never want to undergo steroidal ointment. They choose TSW. But they well know that only TSW cannot cure them. And they want to try a unique combination of vitamins and minerals and herbs. It takes long time for them to cure AD by only vitamins, minerals and healthy foods without steroidal ointments. Most will show improvement but most will not be cured 100%. Even in such a case, it is not the TSW that is curing them but the lifestyle changes made during this time.

I also prescribe ointments that contain very fine powder of several kinds of stones. When wild animals get injured, for example, when the foot of a bear is injured, the bear puts the foot into the earth. Because he or she knows the natural healing power of the earth — soil and stones. Deer lick rocks to supplement trace minerals. Monkeys bathe in hot spring to heal injured body (at least in Japan!). They understand the water from the earth is effective. Let’s discover the natural healing power!!

Best regards,

Tadahiro

I thought our exchange was finished until I received another email from Dr. Makise just a few days later. This was information on a specific patient who had gone through TSW and how his life had diminished before seeking treatment.

Dear Mr. Kastner

Male. 21 years old. University student. He was diagnosed as atopic dermatitis (AD) at the age of 3 years old. Without AD, his general health is excellent. I have attached pictures

He underwent TSW in September 2012.

He came to us April 2013. So, he was undergoing TSW for 7 months. His IgE went up to 70,000 IU/ml (seventy thousands) !!!
(Normal IgE should be under 170 IU/ml).

He was diagnosed even with “Hyperimmunoglobulin E Syndrome” by a physician, because the physician didn’t know that he was undergoing TSW. Of course, he didn’t suffer from “Hyper IgE Syndrome” but just because of radical TSW.

While he was undergoing TSW, he took Chinese herbal medicine to cure the problems of his inside but it didn’t work ( Personally I don’t trust the application of Chinese herbal medicine for AD. Not effective. I saw a lot of unsuccessful cases ). During the treatment of TSW, he could not go to school at all, not possible to sleep, too itchy like hell. Now all are OK. But still sometimes eczema will appear and he needs steroidal ointment, because his inside has not been cured perfectly but the amount of the steroidal ointments are getting less and less with vitamins and minerals. He can go to school, and he passed the employment examination to one of the prestigious insurance companies in Japan and he will work there the next year.

If he had continued TSW, there was really no future for him socially, too.

But we must know that he had had conventional treatment ( I mean “applying steroidal ointment for eczema and rash”) before he underwent TSW. But he got to know conventional steroid treatment would not cure his dermatitis. Then he was trapped by TSW. But his symptoms got much worse by TSW and he gave up it. So, the crucial point is that the conventional steroidal ointment treatment does have defects, too, for some cases.

AD is probably more difficult to cure than psoriasis. Not so easy disease because so many complicated factors are involved. Not so simple disease as cured only by TSW.

Best regards,

Tadahiro

PS: I previously wrote that I have treated more than 50,000 patients over a span of 20 years. To clarify; of the 50,000 patients a lot are repeat patients and I meant to say that I have treated AD patients over 50,000 times which equates to around 10,000 different patients over 20 years. Surely my experience is small compared with old experienced dermatologists. But I can treat AD patients from the internal medicine view.

This ended the question/answer relationship between Dr. Makise and I. We exchanged a few more emails about stone powder, my son’s asthma and some off-eczema topics. I really enjoyed his conversation and appreciated his willingness to respond to any questions I had. I’m always amazed by the number of English speaking people in other countries.

As far as eczema, RSS and steroid addiction, I can’t say there were many surprises. Dr. Makise seems to share the same beliefs as most doctors in the US (albeit, he encourages natural healing a great deal more as I think all doctors should) in that TSW simply isn’t accomplishing very much, there are more dangers than benefits and there are better ways to deal with red skin. Don’t trap yourself in the prison that is TSW for the sake of suffering naturally. It’s simply unnecessary and it will not affect the underlying eczema in the slightest – and the eczema is the problem everyone should be focused on.

Mom holding baby girl

Were My Daughters Addicted to Steroids?

I was worried my two children might have had TSW– as many describe, extended use of increasingly potent steroids on their wee little bodies only seemed to result in MORE eczema appearing in places they had never had it before, and every time we stopped the steroids, the eczema always came back worse than ever almost immediately. Plus, though they had always responded well to the steroids, the eczema was starting to break through even whilst we were still using them. I researched like crazy, read about TSW and ITSAN, was terrified that they might be addicted to the steroids and that the only way to help them would be to put them through hell first. We stopped the steroids for two weeks while I tried to figure out what to do (their eczema was rampant and horrific during this time–my toddler could not sleep for more than two hours at a go and they both scratched CONSTANTLY). Thankfully, I saw a post that a friend had written on one of the eczema boards about how TSW was not the only way and that there was a gentler route. I contacted Dr. Aron and have never looked back.

My eldest is 5 and doesn’t have a sign of eczema anywhere on her body and hasn’t for 7 months bar the odd dry patch which we’ve treated with diprobase or one dose of Dr. Aron’s mixture. She is on one app every 5 days, though I would hazard a guess that she doesn’t need it. We are sticking to it over the winter though on Dr. Aron’s advice–he knows his stuff and I have long since learned to trust him despite the fact that I thought I might never trust another dermatologist again.

My youngest is 2 now and still has flares, but the major HUGE difference between her eczema now and her eczema last year is that these flares can be easily linked to a trigger (usually a virus), are mild compared to before, and they PASS, quickly and without major incident and we get back to using minimal cream to maintain her good skin (once every three days). We have stepped down applications of the medicine successfully where we never could before without rebound and now her eczema is manageable and she is living a normal life. And she sleeps all night every night!

My view of steroids and, by connection, TSW is that steroids are an excellent medication for the treatment of eczema WHEN USED TO THEIR BEST ADVANTAGE. I don’t think applying neat potent steroid to raging eczema WITHOUT treating the underlying infection that Dr. Aron so neatly summarises in his opinions on the condition is at all effective. I don’t think the steroid in any way is causing the eczema or causing it to worsen, but it isn’t living up to its full potential as it does when applied using Dr. Aron’s mixtures and routines. I also think that many, many supposed cases of TSW are actually seriously out of control eczema.

I do NOT think there is a cure for eczema–the nearest thing is to put it in remission, as Dr. Aron often does (in the case of my eldest daughter) and/or to control it, which Dr. Aron almost always does (the only time I’ve heard of him being unable to help was when there were other complex medical issues involved). I think those that do manage to achieve good skin and few to no flares with TSW are only managing what Dr. Aron does, but at a cost of great suffering.

In the course of the last eight months, I’ve gone from viewing steroids as something rather dark and fearful to something fairly innocuous. They aren’t the big bad guys that many people say they are–a lot of conclusions have been jumped to about steroids without, as far as I have researched, a great deal of hard evidence verified by a significant body of trained professionals. Lots of assumptions, but not a lot of fact. Of course, just as any medication or treatment should not be undertaken lightly or without professional guidance, I give steroids proper deference. But they are just a medication. They sure as hell are a million times better than immunosuppressants, with their verified, serious risks. As a last resort, I understand, but I cannot understand how people pursuing clear skin through TSW think that immunos are preferable to steroids.

Dr. Aron’s treatment offers the achievement of the same goal as TSW but under the supervision of a highly trained, highly practised medical professional who REALLY understands how these medications operate and how to use them to achieve the best results. And his results are much more reliable and much more quickly achieved–how many people have I heard about lately who have been in TSW for years??? Madness! How long before a person concedes that it isn’t working? I would recommend Dr. Aron to ANYONE pursuing TSW who has any doubts about their current path to healing.

I think about this a lot, especially when I see/hear some of the suffering that goes on in TSW. I wouldn’t wish that on anyone, certainly not when there is such a brilliant alternative. And just in case anyone is wondering, I am just an ordinary mum living an ordinary life and I get absolutely nothing from recommending this treatment or spending so much time advising other people other than the pleasure of knowing that yet another child (or adult) will find some relief from the horror of eczema.