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.
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.