Tag Archives: topical steroid withdrawal healing time

Over 6 Months and Very Triumphant!

Well my goodness, how does time fly.  I think I owe all you wonderful people another post, since this blog has been silent for a good few weeks.

With TSW blogs, it’s more often than not a good sign when someone doesn’t post in a while!  As my fellow blogger Louise has written, she is “blogging less and living more”!   And the same is true for me.

I would say that I am currently about 90-95% healed and I’ve been that way for at least a good few weeks.  I never thought I would be able to wear shorts, short sleeves or tank tops in public again, but have done so multiple times over the past month!

What TSW victors say really is true, though it’s difficult to believe in the depths of the rash and the itch and the insomnia.  One day you just kind of realize, “Hey, I’m almost healed!”  You start doing “normal” things again, like exercising consistently, not worrying about food, not being obsessed with looking in the mirror at your skin, and choosing whatever clothes you want.  And you sometimes don’t even realize how “normal” things are now, until you take a look back at the dark TSW past, like maybe you run across some pictures of you in the worst of it, or you find your stash of creams or “TSW outfits”, or you realize you have zero need for Vaseline anymore and almost kinda hate the stuff!

I have made a huge dive back into fitness and exercise in these past few months of feeling and looking so much better.  I was a pretty die-hard exerciser, so when my consistent exercise routine got sidelined for a few months (first with a cold that turned into nasty bronchitis thanks to asthma, and then with the worst of TSW), it was kind of like I had lost part of my identity.  Now I am exercising a BUNCH!  I am running, biking, swimming, and lifting with renewed appreciation for my healthy body and how it has healed and how it can do all these amazing things that we so often take for granted.

Now here is where I want to add a little disclaimer, and I think I have brought this up before.  Some people might be reading this and pout and scoff, “Well!  Ms. EczemaExcellence is all fine and good to write about being nearly healed in 6 months, but there is no way she had that quick of healing!  Most adults take at least a year!”  And to that I say, “Why yes!  Yes, gentle reader, you are absolutely right!”

See, it was around this very time last year, that my skin started getting bad.  I actually remember that one day, I was so fed up that I wrote an angry letter “To Eczema”, stuff like, “Dear eczema:  I don’t understand why you’re ruining my life, you’re so controlling and I’ve done everything to try and get you to go away!  I just want to look normal again!  With the help of God, I banish you!”  Not like I thought this would help, but I was desperate and I thought it might be therapeutic, haha.  And it was just over a year ago that I started this blog, and then continued to embark on the journey of trying everything to “cure” myself, until I discovered TSW and then OFFICIALLY stopped all steroids in January.  But without a doubt, I was going through TSW well before I even knew about it.  And my use of steroid creams from July to January was really sporadic, so this use probably just prolonged my healing a little bit.

All that rambling to say, I know I used the title of 6 months, but it really is more like 1 year.

So what is my skin doing today?  As has been the case for the last months, any lingering “eczema” areas are localized to behind my knees and on my arms.  One day recently I wore shorts to the gym, and after working out on the machines, broke out in this weird itchy, bumpy rash behind my knees (which thankfully only lasted a day).  Clearly there was some kind of contact dermatitis issue, so I still have sensitive skin and have to watch out and be cautious about what I come in contact with.  I also got super excited by Miss Kitty’s post about being able to pet cats, and promptly figured that maybe I also would get lucky and be able to roughhouse with dogs in a blissfully itch-free manner.  Visiting a relative’s dog yesterday, I didn’t even TOUCH the thing and my skin and eyes got itchy, so I know that lovingly petting animals is still, sadly, a no.  (This is fine though, I can still admire them from afar.  In the grand scheme of things, there are worse maladies than not being able to hug a dog or cat).

So, I still do itch and get scabs here on my limbs sometimes, but nothing crazy, more just like “normal” eczema, I guess.  I am waiting for some scars to heal and fade before I truly have “clear” skin, but it’s clear enough for me to live with!  ESPECIALLY because my face and neck are no longer affected and to look at me, no one might be the wiser that I ever struggled with this itchy bastard of TSW.  I have the graphic pictures to prove it, some of which I never even posted on this blog, but even for me, the memory of the sleepless nights and the oozing and all the grossness is distant.  I lived it, and I don’t think I’ll ever forget it, but now it’s all about “What have I learned from the experience of TSW that I can use to help others that might be suffering”.

I don’t post a ton on the ITSAN forum and though I try to make my way ’round the blogs, I don’t comment as much as I’d like, but truly – if anyone needs an encouraging word, you are more than welcome to contact me!   Stay strong, skin friends, you WILL come out triumphant on the other side!

 

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TSW, 85 Days – Thoughts on Healing Time

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!

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