Preface

Update: March 2024

I'm really thankful to say that I am now TSW-free. It took 11 years, lots of heart ache, discomfort, and a tonne of research, but I found something that worked for me. You can read more about it here. 

 

If you're reading this, then you're probably wanting to find out more about Topical Steroid Withdrawal (TSW, also known more fully as "Topical corticosteroid withdrawal syndrome" or "red skin syndrome") and/or Moisturizer Withdrawal (MW).
Some points to note:

1. TSW is a real thing. Make no mistake about it, I'm going through it myself and I'm as certain of it as I am of anything. DermNet have even published an article about it as of Feb 2016:
   http://www.dermnetnz.org/reactions/topical-steroid-withdrawal.html
2. Going through TSW is hard. It sucks. You can't sugar coat it I'm afraid, you're in for a nasty ride but the benefits will be well and truly worth it.
3. I've found that the only cure for TSW is time, HOWEVER, I believe there are things you can do to make it easier on yourself and get your skin back to a near healthy state faster (this is all to do with MW, more details on that below after some pics of my hands). 
4. Once you're through TSW your life will be changed. It's awesome to have skin that's better than you've ever remembered (even if it's just breaks in between skin flareups). 
5. There are amazing side benefits to TSW, not just great skin. I completely lost my asthma and I haven't felt any effects of hay fever.

First things first, if you haven't already checked out ITSAN http://www.itsan.org/ then do so. A lot of good stuff there, however they don't really talk about Moisturizer Withdrawal. I believe it's a very real thing and that going through MW at the RIGHT time can hugely benefit people.

Dr Marvin Rapaport's website is certainly a must see as well:
http://www.red-skin-syndrome.com/

 
He's a dermatologist who's well versed in Red Skin Syndrome. His findings and suggestions should be looked at a lot more closely than this blog, which documents my progress, what has worked for me and my suggestions.

Also, join the TSW Facebook page. It's humbling what some other people have and are going through. If it wasn't for their support, I probably wouldn't have made it. There are some incredible people on that page who are going through TSW which made what I went through look like a walk in the park. Click here to join up now and get an idea of what you're unfortunately about to go through https://www.facebook.com/groups/212642132257327

I got in to TSW on Christmas day. The week before I had applied a cream (which I found out had steroid in) and my skin went great! As soon as I stopped, however, the redness and itchiness came right back again. It was red and itchy for ages before that too, getting progressively worse over the months. Once in a while in the past I would apply a flick here and a flick there of Dermol to dry patches on my hands, which helped them out. I was well aware that you shouldn't use topical steroids for prolonged periods, but I didn't think that some small bits on my hands once in a while would be prolonged use and it didn't look like my skin was thinning at all! At the end of the day, the doctors wouldn't keep on prescribing steroids if it wasn't helping me, right? When I went for a patch test (which only showed a reaction to non hypoallergenic sticking plasters,which I knew I had), I asked the doctors there for a prescription for Dermol and they gave me not one, but two tubes without a second thought! Still, I was careful to limit the amount I used to a sensible level, or so I thought... 

Anyway, I had had a guts-full of my hands and their itchiness. What on earth was causing it? I had tried all sorts of diet changes, laundry soap changes, gloves when washing up, wasn't using any soap at all (using QV), went for skin prick tests which reveled that I had only grass and dust mite allergies, so vacuumed constantly, changed bed sheets regularly. Tried anti-histamines, you name it, I gave it a go. Nothing seemed to work. It was also only REALLY affecting my hands! Sure, I had a few patches of eczema elsewhere on my body that would flare up every so often but man, my hands, what a pain. So I hit google and came across TSW and red-skin syndrome.

Screw it I thought, lets try not using steroids! Hmm, looks like the ride could be bumpy though... hopefully won't be that bad for me... Hmm...

So, the rest of the postings in this blog cover my TSW journey. It was really nasty at times but fortunately for me, the TSW was restricted to my hands (so far) and didn't spread to the rest of my body. I count my blessings there! Here's a few "highlights" from my journey so far, clicking on the pics will revel them in all their glory, the small pics don't do them justice:

In the beginning, when TSW started hitting shortly after I stopped steroids, redness and itchiness hits (2014/12/31):

Never realised how much my hands swelled up (2015/02/16):

Splitting, red, pain (2015/02/17):

Redness going, but splitting remained. Using Moisturizer constantly here. (2015/03/09):

Coming out of the worst of it (2015/3/15).

My hands were really good following that last pic for three months, until I had a flare up, which lasted a couple of days for the nasty part, then a couple of weeks to die down (2015/06/21):

It's taken me 10 months since I started TSW until my skin truly came "normal", no redness and actually forget about my hands and TSW for days at a time now! (2015/10/29):

Unfortunately, it appears that flares do keep coming back, knuckles for the first few months of 2016 have been really dry and splitting (2016/03/16):

So, what's my tips?

Firstly, get through the initial stages of TSW, the burning, itching, redness as best you can. It's a really awful stage and it can last months. For some poor people, it can last for years. Top tip for your hands here is to get cotton gloves, snipping the fingers off if you like. Wearing gloves helps to keep your hands clean and I believe holds some natural moisture in. At least it stops you scratching and itching them. Aveeno moisturizer seemed to help me the best, this will be a personal thing, sometimes you can't use moisturizer at all.

Also, I ate well, tried to have a vegetable and fruit smoothie every day, took some Fish Oil as well. Basically, take care of yourself so your body can regenerate more easily.

Things I wish I did differently through those initial months? Use less moisturizer. I was applying the stuff almost every HOUR. I wish I restricted use of moisturizer to only 2-4 times a day. I also wish I found Aveeno moisturizer earlier, that stuff softens dead skin, however, as you'll see on the Facebook page, it's not for everyone. We're all different.

Things I'm glad I didn't do, give up coffee and moderate alcohol consumption. Didn't seem to make any difference for me and they're stress revilers and treats (although many suggest stopping), however, everyone's different, I doubt it would do you any harm to stop those! My Doc actually suggested that I have 1-2 units of alcohol daily, to raise good cholesterol. I'm male and approaching 40 (and my younger brother just had a triple bypass due to blocked arteries!), therefore it's statistically good for you (any more is detrimental and you can't bank it!). Women should only have 1 per day when you're 40+ (apparently).

HOWEVER, my suggestion and what I'm really sure helped me out immensely, was to ween myself off using moisturizer as soon as the REDNESS goes. I really don't suggest you go cold turkey, your skin will go totally mental, splitting and flaking like mad (well, it did for me).

I suggest that once the redness goes away, try to limit yourself to only using moisturizer after showering and perhaps a few hours after if you can't help yourself. Do this for 4-6 weeks and then do total moisturizer withdrawal. 

When you're feeling brave and you stop using moisturizer altogether your skin will be dry, itchy and flaking a bit after showering but stick with it and you'll notice after a few hours your skin will settle down for the rest of the day. I first started total MW by showering before bed, so I could go through the night asleep with my skin recovering.

If you're like me, you'll start to notice your skin getting better and better after a few days and then daily. Your recovery time after showering will improve quickly. After just a couple of weeks, you won't even think about using moisturizer. It may have just been fluke with what I've done and my timings, it may only work for me but I think there's a good chance that some of my suggestions will help you out as well. I've heard of MW helping so many people in Facebook comments. You just need a way of doing it right and appreciate that MW is a several week process.

I think it takes about 4-6 weeks for developing skin cells to reach the surface of your skin. If those cells haven't been exposed to moisturizer then they should know how to naturally oil themselves. Stick with it for at least 4 weeks if you can. If you can't try again in another month if it's too much.

So, that's my big tip, go through MW as soon as the redness stops and don't go cold turkey.

Wishing you all the courage in the world if you're about to embark on TSW. Use the Facebook group, read the stories, read all the hints and tips that people suggest. Hopefully some of them will work well for you. 

TSW will be worth it in the end, believe me.