As someone who reads posts from the Facebook TSW support forums every day, I see a lot of people who are treating their condition as TSA/RSS and undergo withdrawal accordingly, believing that their condition will eventually be resolved by ceasing topical steroid use as claimed by Dr Rapaport.
However, I also wonder how many of these cases are genuine TSA/RSS, and how many are actually just eczema cases with other underlying causes that have not been addressed. This is particularly the case for parents who believe their children have TSA/RSS despite a very short period of usage and/or low potency. It just seems odd to me that children can develop an addiction to topical steroids in say a month or two of normal use or using just a handful of times in a number of years, and yet there are parents out there who force their children to go cold turkey without first looking into other possible causes or solutions.
This highlights one of the biggest problems with TSA/RSS — the vast majority of cases are self-diagnosed. Unless you’ve forked out the money to see one of the few specialists in the world who even acknowledge TSA/RSS exists — like say Dr Rapaport, or Dr Fukuya (when he was practicing) or Dr Sato in Japan — chances are you are merely “guessing” that you have it.
Of course, ceasing steroid use can never be a bad thing, but it’s also dangerous to assume that simply stopping steroid use will solve all your problems. After all, TSW is a harrowing process, a living hell I would not wish upon my worst enemy. And it can take months, if not years. It should be the last thing a child should be subjected to. If you’re going to take the long leap into the abyss, you better be damn sure you’ve actually got it. But how?
A good starting point is the ITSAN checklist which sets out the most common symptoms of the TSA/RSS. For convenience sake, I have reproduced it below.
The problem is, a lot of these symptoms could be just eczema-related or due to other conditions the person has not identified. There are, however, some symptoms that appear to be unique to TSA/RSS, and these would be: Rashes gradually spreading to new areas over time, progressively requiring higher dosage steroids to achieve the same efficacy, flaking of the skin, redness all over the body including areas where steroids were never applied.
For me personally, I’ve had most of the symptoms described above thus far, with the exception of enlarged lymph nodes. Even so, and despite usage that spanned decades, it took me a while before I was convinced that I had TSA/RSS. As I noted in My Story, there came a point when I suddenly realised that my previous treatments for eczema stopped working or almost stopped working. It was so obvious, and it came with serious flaking, which I never had before. It got to a point where I had to either take oral steroids or use topical steroids daily in order to keep the rashes at bay, and as soon as I tapered I knew a flare would be forthcoming.
My only doubt was that I didn’t think I had the “burning” sensation many RSS sufferers were talking about. My skin did get crazy inflamed and felt very hot to the touch, but I wouldn’t go as far as to say it burned. And when I started TSW anyway and suffered beyond anything I could have ever imagined, my wife started worrying that perhaps I had some other factors either causing or exacerbating my symptoms. A TCM doctor took one look at my yellowish/greyish tongue and concluded that I had a very inflamed gut. For a while, I was convinced I also have/had leaky gut and/or candida. The more you read up on these things, the more you become a hypochondriac.
Instead of continuing to pour time into reading more conditions I might have had, some of which was contradictory anyway, or spending thousands more on supplements I probably did not need, I finally decided to do the smart thing and get myself checked out with a series of blood and urine tests. The doctors at hospitals or clinics might not agree with or even know about TSA/RSS, but they can’t refuse to run tests for you.
I’m so glad I did, because it ended up removing a lot of lingering doubts. It wasn’t cheap, but it was worth every penny. I first got a blood test done at a hospital, which was not very comprehensive, but showed that my cortisol levels, at least in the morning, were normal. All other health indicators were within normal range, except for my bad cholesterol, which was slightly on the high end but nothing serious. My eosinophil levels, which indicate an allergic disposition, was also higher than normal, but this was expected given my condition.
I then got a series of more comprehensive tests done through a naturopath, who didn’t really know much about TSA/RSS but was willing to hear me out and keep an open mind. For starters, the tests showed that I didn’t have candida but I had small intestinal bacterial overgrowth (SIBO), which is arguably even more annoying. But there are different approaches to tackling candida and SIBO, and I never would have known this would the tests.
In fact, SIBO could be the very reason why my eczema spiralled out of control in the first place and needed so much steroid use to contain it. You see, about 4 years ago I started taking an antihistamine called Xyzal, and it pretty much liberated me from eczema. I didn’t itch and I didn’t get any rashes for a very long time, which gave me a false sense of security. As a result, I ate very poorly, with lots of sugar, dairy, gluten and fried foods. I also took a lot of whey protein as I was working out a lot, never realising that all of these things, along with the antihistamine itself, was doing serious damage to my gut lining. Later on, a period of serious stress followed by an illness that kept me on antibiotics for a whole month might have been what pushed me over the edge.
Anyway, I am now taking a herbal supplement to kill the SIBO, and I’m also taking probiotics (of course) to put the good bacteria back in. The other thing the tests revealed was that I was lacking in vitamin B6, which came as a surprise as I took a multivitamin loaded with B vitamins, including B6. The naturopath prescribed me an “activated” B6 supplement, and I guess we’ll see how my next test turns out. Importantly, the tests also showed that I didn’t have any thyroid problems as I had suspected (due to family history), and that my liver and kidney functions were normal.
On top of that, my allergy tests revealed that there were no foods I was immediately allergic to (IgE allergy), but I did have some foods I needed to avoid because of IgG allergies, which builds up in your system over time. Not surprisingly, these were wheat (moderate), dairy (severe) and eggs (severe), foods I had consumed practically daily all my life. Interestingly, in the IgG test I had done four years ago, I was severely allergic to wheat but only moderately allergic to dairy. It’s possible that, because I had effectively cut out wheat from the start of my TSW journey, the wheat allergy was already starting to fade. Either way, I’m going to stay away from wheat and dairy until at least October — the recommendation is 6 months for severe allergies, 3 months for moderate allergies, and then sporadic intake thereafter. In other words, it does not mean I would have to stay away from some of my favourite foods (pizza, dumplings, chocolate milk) for the rest of my life. I just need to be careful and consume in moderation after my body is clear of the allergens built up in my body over time.
Diet and TSW is a touchy subject, one I hope to do a post on shortly. For now, all I will say is that I am hoping I will eventually get my old life back for the most part and be able to live on a non-restrictive diet. Several people with medical knowledge, including my current naturopath, have all said to me that you can basically eat whatever you want as long as your gut is healthy. So that is what I am working toward — a healthy gut — which I am praying will also take care of my eczema problem once TSW has run its course.
I’ve gotten off track a little, so allow me to steer the topic back to the question of being sure that you really have TSA/RSS. Can you imagine going through TSW symptoms for months or years and then discovering that you could have rectified the situation through other means? What if you could have spared your child the agony of TSW? That’s why I recommend getting as many tests done as possible to be as sure as you can that you don’t have any other underlying conditions either mimicking TSW symptoms or exacerbating them. You might not find anything in the end, but at least you’ll have peace of mind.