Photo caption: Dr. Marvin Rapaport (left) vs Dr. Richard Aron (right)
IMPORTANT UPDATE: I started this blog and wrote this post a while back and totally forgot about it. Why? About 6-8 months into TSW, I finally started seeing improvements. I could finally leave the house without feeling self-conscious. The redness on the body slowly went. The flaking gradually subsided. I would say about a year in, I had about 95% of my life back, and in many ways, it was better than before. I simply appreciated life and everyone in it so much more.
Now, about 18 months in, TSW is deep in the rearview mirror. In terms of skin-related quality of life, I’m at the best I’ve been since…probably my mid-teens (about 20 years ago). I probably still need to shed a couple more layers of skin on my hands, arms and neck before I would say my skin is 100%, but it’s a slow process that I don’t monitor any more. To the naked eye, my skin is entirely normal, better than before I had any flares. I use an oil on my face now (to keep those wrinkles at bay) and nothing on my body. I haven’t tried swimming in chlorinated water yet, but I’ve done Japanese onsens with no problem, and most importantly, I can sweat profusely now without regretting it afterward — one of the biggest issues I had before, even before TSW. I eat whatever I want now, though I try to avoid having too much wheat, eggs, dairy or processed foods when I can and when I can’t, not have it too many meals in a row. The biggest change that still exists is probably that I now have my daily coffee with soy milk instead of regular milk.
But as often as is the case when you’re better, you tend to forget to be good. I’m referring to the diet part. In instances where I’ve eaten lots of the above foods every day and every meal, plus not gotten enough sleep, I still get a bit of an itch on my hands or shoulders. But unlike before, I don’t put anything on it. In the past, it would NEVER go away unless I put a steroid cream on. Now, it just goes away by itself, sometimes in less than 24 hours.
For total transparency, there are still two lingering effects. The first is sleep. I started taking sleep medication about 7 months into TSW to cope with one of the worst side effects of withdrawal, and I am still on it, mostly because it provides a safety blanket. But I’m tapering off next month after I finish a work project that’s really been keeping me busy and stressing me out. The second is that I have these couple of little growths on the bottom-right side of the back of my left hand, probably about a centimetre apart, about 2-3 millimetres in diameter, less than a millimetre in height. They’re really not noticeable to anyone other than myself. They just keep developing scabs on them, which gradually peel off, but I can still feel the lumps when I run my fingers over them. I assume they will go away eventually, but for now, I kind of like them there, as a constant reminder of what I went through and to cherish what I have.
Anyway, it’s interesting reading back on my TSW experience now. It really does feel like a bad dream. The other day, I started getting a bunch of comments out of nowhere, which brought me back to this blog. Apart from a couple of error corrections (pointed out by readers) in bold, everything else in this post remains the same as when I wrote it.
Anyone who has done their research on RSS/TSA/TSW would have likely come across the so-called “Dr. Aron’s approach”, which is said to offer an effective alternative to the suffering of withdrawal. It sounds almost too good to be true, and yet there are patients who swear by it. I hence thought it would be prudent to have a level-headed discussion about this.
What is Dr. Aron’s approach?
First of all, just what is Dr. Aron’s approach? Whereas Dr. Rapaport suggests total cessation of steroids as the only cure, Dr. Aron believes there is an effective and minimally-invasive method that can achieve the same desired outcome. Essentially, Dr. Aron prescribes his patients a creamy concoction comprising three key ingredients — a moisturiser, a topical steroid, and an antibiotic.
I hear you say, “What? He prescribes more steroids?” Yes, he does, but he claims the harmful effects of steroids are minimised because they are so diluted by the moisturiser, and in any case it appears he does not truly believe in steroid “addiction”. In fact, his view is that the spreading “redness” of RSS is in fact the proliferation of staph, a bacteria we all have on our skins normally but tend to go haywire on eczematic/TSA skin. That’s where his third ingredient, an antibiotic, comes in. The antibiotic presumably kills the staph, stopping the spread of the rashes, while the moisturiser and steroid keep the existing rashes under control.
And according to Dr. Aron and his supporters, his creams can be used in perpetuity if you need, though in many cases he will get you to gradually taper down, to the point where you never have to use it again or only as necessary as maintenance whenever rashes reappear. Sounds pretty good, right? Compared to the agonising suffering of TSW, if I could just apply some cream in a few problem areas every now and then and be no different to a normal person, why the hell would I not jump at it?
Dr. Rapaport vs Dr. Aron
But of course, I remain sceptical. After all, the solution to steroid addiction can’t possibly be more steroids, can it? Besides, Dr. Rapaport has specifically addressed Dr. Aron’s approach on his website and claims to have “debunked” it. The gist is that staph is not the problem and the only reason the cream works is because of the steroids. In other words, it’s just yet another band-aid solution that is merely delaying the inevitable and actually gradually pushing you toward it.
This explanation kind of makes sense to me. While I don’t doubt staph makes our skin more red and itchy, surely RSS is not as simple as that, or else Dr. Aron wouldn’t even need to put steroids in his creams. Besides, I have read posts from people going through TSW who claim to have done skin swabs that show no staph abnormalities. So my guess is that while the antibiotics in the creams may help alleviate the symptoms, it is still the steroids that are doing the bulk of the work. That said, if you don’t believe in steroid addiction, there’s no reason why you can’t keep using them — though that begs the question of why Dr. Aron would advise tapering off (other than to save you money?).
There are other reasons to be sceptical too. For starters, Dr. Aron’s website is called ETSIN (Eczema & Topical Steroids Information Network), which seems conveniently similar to the ITSAN Dr. Rapaport had been affiliated with. It just seems too coincidental to suggest he’s not at least trying a little bit to mislead people. CORRECTION: It has been pointed out by some that ETSIN is NOT Dr. Aron’s website, which is actually www.draron.com. ETSIN appears to be a website created by a group of parents who support the Dr. Aron approach. Secondly, I understand Dr. Aron’s prescriptions are very expensive, upward of hundreds of dollars a month. Contrast that to Dr. Rapaport, who may charge an arm and a leg for a consultation (I hear it’s gone up from US$500 to US$750) but is not peddling any products or miracle solutions — he knows the suffering is bad, but insists it’s the only way. It is not surprisingly why some on the ITSAN and other support forums outright accuse Dr. Aron of being a charlatan. NOTE: Dr. Aron does not sell any creams himself; he provides his special treatment compound prescription for a consultation fee. Doctors who accept Dr. Aron’s approach in parts of the world where the compound can be legally prescribed will prescribe the compound, which is then made by chemists that can do it.
Sadly, there is virtually no calm, constructive dialogue between the two camps. I have joined both TSW and Dr. Aron groups on Facebook, and the vitriol is real and spectacular. As noted earlier, the TSW folk believe Dr. Aron is the devil trying to make a quick buck (I don’t believe that personally; I think he truly believe his method helps people), while the Dr. Aron supporters think TSW folk are idiots for putting themselves through unnecessary suffering (after all, linger eczema may remain after withdrawal), and in cases of putting their kids through TSW, reprehensible parents. I personally think Dr. Rapaport’s curt, sometimes condescending attitude toward those who disagree with him has definitely rubbed some of Dr. Aron’s supporters the wrong way.
So I went on the Dr. Aron board to ask members whether there are any people who have been completely cured of eczema or RSS using Dr. Aron’s method, and whether they have stopped using his creams forever or need to keep using them in perpetuity. The responses I got were quite interesting. It seems the majority are parents who have put their kids on the regimen because they can’t bear making their children suffer through TSW. And in these cases, the results of Dr. Aron’s approach have been fantastic — either complete cessation of creams or some kind of maintenance dose of once or twice a week. There were a few adults who put their hands up too to say Dr. Aron’s approach worked on them too, but were generally vague about the extent. It seems to me that they are all still on the creams regularly and periodically, but because they can live normal lives, they consider themselves success stories — at least for now. Tellingly, many of them insist there is no cure for eczema (like what dermatologists say), but that Dr. Aron’s approach is the best and safest way to control it.
After reading Dr. Rapaport’s scathing Dr. Aron articles in more detail, I think there is a bit of a misunderstanding here. Dr. Rapaport doesn’t say topical steroids are the devil and that they should never ever be used under any circumstances — in fact, he even prescribes it to some of his patients, but always with strict instructions about dosage, length of use, and a blanket prohibition for use on the face. In seems what Rapaport is railing against is the claim that RSS/TSA — that is, when you are already clearly addicted to steroid use — can be cured using Dr. Aron’s approach. In other words, if you have a bit of eczema and the steroids help, then sure, go ahead and use some. But if you’ve been using steroids for years and have gotten addicted, meaning the rashes rebound and spread upon cessation of use and you’re getting typical RSS symptoms such as the red skin and flaking, then using Dr. Aron’s approach is just making things worse and delaying the inevitable. This is why I think Dr. Aron’s approach might not actually be terrible for children and also adults with only eczema (but not TSA), provided if it’s only short-term use and does not induce addiction.
That said, I believe it is risky. Many of us who have got TSA developed it over a number of years and long periods of clear skin followed by more serious rebounds and spreading. It might be a mistake to think just because Dr. Aron’s approach has cleared your skin for a few months or even a couple of years that you’ve been “cured”, or that you might not eventually develop an addiction before you know it.
Looking back, I truly think my addiction developed when I started using a concoction developed by a Sydney dermatologist for children about five years ago. This regimen was similar to Dr. Aron’s in that it used steroids diluted in moisturiser — there was a morning cream with a thinner moisturiser and a low dosage of hydrocortisone, and a night cream with a thicker moisturiser and a low dosage of Elocon (mometasone). The major difference was that there was no antibiotic, which Dr. Aron advocates insist is crucial. Anyway, I started applying this cream liberally to my entire body and face when my eczema got worse about five years ago. I believed the low dosage meant it was safe, and more important, it worked like a bloody miracle. I had visibly smooth skin with no rashes whatsoever and it made me feel as normal as I had for years. Coupled with Xyzal, an antihistamine, I genuinely thought I had “beaten” eczema for good, and this honeymoon period continued for at least a couple of years before TSA reared its ugly head.
I didn’t use the cream constantly because my skin would be cleared within several days of use each time. But without fail, the rashes would come back eventually, and slowly and gradually, it took longer and longer and more and more applications to clear. Before I knew it, I was flaking skin non-stop and flaring up as soon as I stopped using the cream or tapered down. Even the traditional Chinese medicine that worked so well in the past stopped having any effect. In other words, my eczema had developed into TSA. This I am absolutely certain of. If only, knowing what I know now, I could turn back time and try to heal my eczema naturally from within by avoiding allergens, healing my gut and reducing stress — then perhaps I wouldn’t be enduring the hell I am going through now.
This is what I believe happened to me. I have no way of proving it. What I do hope is that there can be more a more civil discourse between people who have taken the TSW plunge and those who believe Dr. Aron’s approach is the way. We are ALL suffering here and looking to cope the best way we know how. Desperation makes us do desperate things. Some are strong enough to do TSW, while others believe alternatives such as Dr. Aron or immunosuppressants are more practical.
As for my future, I currently have no plans to stop TSW (I’m a little over 4.5 months) and switch to Dr. Aron’s method. I know the road ahead is long and arduous, but I just have too many fears and doubts to go back to a steroid-centric approach. I worry that Dr. Aron’s creams are merely a long-term band-aid solution that merely continues to suppress the symptoms while allowing the immune system to be more compromised, and that it will all eventually come back to bite me even harder down the track. It might be years or even decades later, but I am terrified that there will come a day when his creams stop working and I’ll have no choice but to keep upping the dosage (causing further harm to my damaged immune system) or restart the TSW process — except this time it will be even more severe due to the extended use. That is why I genuinely fear for the babies and kids who might seem to be doing very well right now on Dr. Aron’s regimen. I hope I am wrong. I truly do.
Having said all that, I would definitely be willing to switch to Dr. Aron’s approach if I can be certain that it is a “permanent band-aid” capable of being applied for life without eventually losing efficacy or causing other major health problems. The suffering of TSW is simply too egregious to not consider this alternative. Unfortunately, I have yet to come across a single person with RSS/TSA (as opposed to eczema) who has been on Dr. Aron’s creams for long enough to say definitively that offers a permanent solution. If you’re out there, please let me know.
UPDATE: Someone has come forth on the Dr. Aron Facebook page. They had eczema most of their life before developing TSA/RSS symptoms. After going through TSW for 6 months, they switched to Dr. Aron’s approach and now has near flawless skin. The itch supposedly went away almost immediately and skin was clear after just 10 days following 5 applications a day (3 on face). Now they spot a couple of treat problem areas 2-3 times a week, though on a good week they can go without using the cream completely. They are convinced that they had bad staph skin colonisation, and it was the antibiotics in Dr. Aron’s cream that took care of it.
However, lingering doubts remain for me. If staph colonisation is the main problem of RSS, how does that explain all those people who healed naturally through TSW without even treating the staph? Also, doesn’t using antibiotics to kill the bad bacteria on the skin also kill the good bacteria too? And none of that explains the other symptoms of RSS, such as the weird sweating, the insomnia, the elephant skin, nerve pain, and so forth. Spot treating 2-3 times a week was actually not too far off from where I was at before too, so I feel like things could still eventually spiral out of control. I am however keeping an open mind and will keep my eye on further developments.