WHEN WILL I HEAL?
That’s the question on everyone’s mind going through TSW. Although I wish I knew when the “endpoint” would be, just like everyone else, it’s probably good that we DON’T know, as maybe that would be discouraging.
I have accumulated various perspectives on healing time from the ITSAN forum and from other TSW blogs:
The general consensus seems to be that an adult going through healing will take at least a year. Anticipating a shorter recovery than this may be setting yourself up for disillusionment, unless you were a very short-term user/used very mild creams. Although having complete healing in a year doesn’t necessarily mean that you’ll have a whole year of hell – the symptoms may become more mild and tolerable well before that, but not have 100% healing.
I have read comments from people on the forum that are nearing a year or even longer (18+ months) and they are STILL flare-y and miserable. However, these are often people that used strong steroids on large areas of the body for a long time.
Regarding steroid strength, my blog-friend Louise from the UK has just posted a great, informative post about topical steroid potency. The potency of the strong steroids is shocking! Safe to say that someone who slathered Clobetasol all over their face is likely going to have a rougher time of it than someone who used hydrocortisone sporadically.
This post is a little bit all over the place, but before I ponder factors on my own healing time, I have been thinking that I actually was going through TSW a bit back this fall, before I knew what was going on. I had overall crappy skin on my face from September 2012 through January 2013 (and late January 2013 was when I began official withdrawal). I would get a few sporadic (and DRAMATIC) “breaks” where I would wake up with smooth, nearly flawless clear skin on my face for a day, and then the next day it would start to regress and get bad.
Because, try as I might, I couldn’t trace these breaks or flares to anything specific that I was putting on my face or ingesting (with the exception of finding out that Aloe and Beeswax highly irritated my skin), I can only think that this had to be a form of TSW.
In addition, I think that my use of steroids in the last 1-2 years is what “sent me over the edge” of addiction, so to speak. I had used steroid creams sporadically starting about 6 years ago, when I was 20. If memory serves me, I had mostly problem-free skin from about 21 to 25 years old. Keep in mind that I did still have eczema, so I’m sure I had the odd flare-up, but I was nowhere near as obsessed with my skin as I am now – there was no reason to be, it was manageable and controlled! Therefore I believe that I wasn’t “addicted” before, but because the skin seems to remember the cumulative use of steroids, the more recent instances are what sent me into full addiction with spreading rashes over much of my body and now withdrawal.
One common guideline for healing time can be found on the ITSAN FAQ page. One of the foremost doctors that has been involved in topical steroid research believes that it takes 10-30% of the time you used topical steroids to be fully healed.
This is tricky to think about, especially for someone like me who didn’t use them constantly for days at a time. Does this mean 10-30% of the 6 years from when I first started using them? Or 10-30% of the total time I used them, which would probably only add up to about a year? It really has to be the first one, because if it was the second one, I could be mostly healed by now at about 3 months in, and I am not.
Therefore, it appears that I am looking at 6-18 months of healing time. Another blogger I talked to who is much farther along in TSW than me has noted that the skin has 7 layers that the body has to repair, and you are looking at multiple weeks for the body to regenerate each layer. So let’s say it takes 5 weeks to regenerate all 7 layers, then that would be 35 weeks, or close to 9 months. This really makes a lot of sense, because let’s say you have very, very damaged skin and it takes 12 whole weeks to repair one layer. Then that would mean 21 months (or more), which is an accurate timeframe that hardcore users have taken to be fully healed.
Some other factors to consider are the use of oral steroids, use of steroids in childhood, using topical steroids on areas that have very high absorption rates (like the face, eyelids, or groin), and cumulative use.
For me personally, I do remember being given a dose of oral steroids once in childhood for a bad asthma attack. I also was very sick with Mononucleosis in the winter of 2010 and I *believe* that I received some other kind of steroid shot, but I’m not certain what it was. However, to my knowledge, I wasn’t on stuff like oral prednisone or anything like that.
I also never used topical steroids in childhood, and I never used them for a long, cumulative period of time.
However, the big strike against me is that much of my topical steroid usage was on areas with very high absorption – my eyelids/eye area and my face. So it will be interesting to see how exactly this plays out. Summer is coming and it is my very favorite season – I want to be able to enjoy it and wear summer clothes and even bikinis and go swimming and running and everything. Hopefully I heal enough to do at least some of that while summer is still the season.
Re: skin progress – I am entering another “calm phase” and it is such a relief to not be itching constantly. The TSW journey is nothing less than hellish and discouraging (and I didn’t even have the awful time of it that some people have – I wasn’t completely debilitated and I could still work at my desk job), but entering another healing phase feels like a gift. Don’t lose hope, my TSW friends!