Status Update – December 2014 (2 months)

Having posted about my warts, I decided to take some more pictures for a status update.  As mentioned in my previous post, I've been wearing blue surgical gloves in an attempt to stop my hands from drying out and scratching.  It actually works pretty well, though I am a bit weary of giving myself some kind of bacterial or fungal infection.  I'm going to look at getting some more breathable gloves, preferably ones that don't make it look like I'm about to conduct a body cavity search.

These pictures were taken after a session on a rowing machine.  It's pretty exhausting, and makes my skin sting somewhat, but I'm going to see if it makes any difference to my condition.  I've found that it actually causes any dry skin to soften and rub off in the shower, so exercise may prove to be a more effective and less time-consuming alternative to baths.

Slightly better photos of my hands this time; you can more clearly see the thick skin which has developed over time.  I would say they feel better than last time, mainly due to the gloves, though the skin between my thumbs and forefingers is dry and cracked.

 

These photos of my arms better demonstrate their condition.  Not quite a full "red sleeve" (though the right arm looks more like it, mainly due to my red wrist), but somewhat irritated.

Overall, not too much change, but then what did I expect just two weeks later?  Still waiting for a significant change in my condition.

Night night!

Vanishing Warts

Just making a note that the warts on my fingers seem to be becoming less defined for the first time in years.  Whether this has anything to do with TSW, I don't know.  Could also be because I've been trying to wear gloves for the past few days to try and reduce my scratching.

Status Update – November 2014 (1.5 months)

Here I am around six weeks after ceasing application of topical corticosteroids.  As you can see, my condition isn't all that bad compared to that of some others you can find on the internet.  I have no idea whether it's going to be all uphill from now on, or whether I am going to experience the "flares" I hear people talking about.  Well that is why I'm going to try and keep this blog!  So I guess we will find out.

I haven't experienced anything that I would call a "flare" as of yet.  The condition of my skin tends to vary from day-to-day, with no noticeable pattern (I've grown used to this over the years), but has been fairly steady so far.

As you can see, my neck is fairly red and inflamed, and it can be pretty uncomfortable to turn my head at all on a bad day.  The areas on the side of my neck, where my skin folds, get insanely itchy, and as a result, can get quite sore and cracked as a result of scratching.  You can see in this picture several red patches where I have scratched my skin raw.  One patch is shiny form being freshly scratched.  My forehead and the the area around my eyes are also pretty irritated, though not as badly as my neck.

 

My hands – though it may not look like it – irritate me the most on a daily basis; they itch like hell, flake like crazy, and have become painfully cracked at times.  The end of my fingers are particularly irritable, and the skin at the beds of my fingernails has mostly come away, which is either caused by, or aggravates the skin there.  The skin on my left forefinger in particular has receded slightly, which has been pretty painful at times.  The skin on my hands is quite thick, which is something which has been getting progressively worse for the past year or two.  I have occasionally accidentally scraped the top layers of my skin off entirely, leaving a weeping wound which takes a good week or so to really start to heal.  Not pleasant.

My forearms are slightly red, with the skin around my wrists and elbows being the worst.  My upper arms, especially the areas around my armpit on either side, have also been getting dry and itchy recently.  My thighs also get itchy, and have particularly thick skin, though this may be from the scratching more than the steroids.

At the moment, my skin care routine involves showering in the morning, applying an emollient (Epaderm), reapplying throughout the day (washing my skin if it feels particularly irritated), and using aqueous cream with 1% menthol to try and suppress itching (this can work really well sometimes).  I generally take a one- to two-hour bath in the evenings, which not only soothes my irritated skin, but also causes the layer of dry skin to rub off, which seems to relieve my soreness somewhat.  I take antihistamines before bed, and sleep with my windows open to try and keep myself cool.  If I get sweaty at night, I tend to wake up with an unbearable itch, and scratching (especially when half asleep) most definitely does not help the situation.

I have read some recommendations that not moisturizing can help speed recovery, but I simply cannot go without moisturizer; it is too painful.  Maybe I'll be able to try it at some point, but I guess that will have to wait for another update.

Until next time!

My History

I have suffered from mild eczema ever since I was a small child, mainly on the insides of my elbows and, to a lesser extent, knees.  I was prescribed a topical corticosteroid cream (0.1% Betamethasone Valerate, a.k.a. "Betnovate") to keep it under control.  The cream worked wonderfully, with no side effects, for my entire childhood and teenage life.  By the time I was at university, I very rarely used the stuff, and was mostly eczema-free.  I still had occasional rashes (still on my elbows and knees), mostly when I got hot and sweaty, or when pollen or animal hair brought it on, along with other hayfever-like symptoms.

However, in my third or fourth year of university, I started experiencing itching and rashes on my fingers and back of neck.  This was unusual, because these areas had never been a problem before.  I honestly cannot remember my pattern of topical steroid usage at this time, but I do know that I eventually started to apply them to these areas to reduce the inflammation.  The rashes weren't particularly bad as far as I remember, but I knew that the steroid cream was only a problem if used in high dosages (skin thinning etc.), so I applied it conservatively and the redness went away.  Over time, I noticed that my skin was getting increasingly sore and inflamed whenever I stopped applying the cream; I assumed this was simply my eczema getting worse, and continued applying the cream whenever the irritation reached an uncomfortable level.  Trips to the GP's to get a prescription for more cream confirmed that I was not applying it excessively, and that my skin did not seem to be thinning, so I continued applying for another four or five years (until today).

My memory isn't reliable enough to accurately report the the condition of my skin throughout the years.  All I can say is that my eczema was localized to my elbows and knees until during university, when it started to spread to other parts of my body, and require more topical steroid cream to keep it at bay.  I do remember times in my teenage years when parts of my scalp and fingers would become itchy, but these episodes cleared up without intervention.  Over the years, I have never used more than one 100g tube of cream per year, which as far as I can tell is far less than many others experiencing TSW. 

Today, I have gone about one and a half months without topical corticosteroids.  I didn't note the exact day I stopped, since this isn't the first time I have tried to come off of the cream; I have gone periods of up to a month without applying any, during which my skin would flare up to the point where I could not move my neck without significant pain.  For the past four years or so, I have been applying the steroid cream for a maximum of seven days (as directed by the doctor), followed by a cessation of a few weeks or so.  I was cautious of the skin-thinning effects of topical steroids, and so always went as long as I could bear without it.  As a result, I am no stranger to the effects of steroid withdrawal (assuming this is what I am suffering from), having cycled between perfect and inflamed skin over a number of years  During this time, I would visit the GP, always to be given the same advice about allergens, anti-histamines, stress, emollients, hot water and topical steroids, along with a prescription for the same steroid cream (once I tried a different, weaker one, which didn't seem to work so well).  I was told that people usually grow out of their childhood eczema, and that it was quite unusual for eczema to become so much worse during adulthood.  I was told that I may have to deal with this for the rest of my life.  I was accepting of this, and kept using the topical steroid cream.

So what made me decide to stop using topical steroids?  Partly my own feelings about topical steroids, partly research on the internet, and partly an insistence from my fiancee that I should not continue to use the stuff (her intuition is often remarkably reliable).  My previous month-long abstinence was motivated by a personal suspicion that I was experiencing topical steroid withdrawal.  I had not done any significant research (that I can remember) at this point, so after a month of pain (which involved several horribly uncomfortable long-distance flights) I decided to go back on the cream.  When you have an easy solution that can seemingly take you back to perfect health within a few of days, it is so easy to take that solution and accept that the symptoms are due to an underlying condition, rather than due to the treatment itself (again, and for the last time, I emphasize that I am not absolutely sure that I am experiencing TSW).

The symptoms I am experiencing seem to be on the low end of the scale compared to some of the reports online.  I have only taken a few days off of work at the beginning of my withdrawal, My second month is like the 15th month of some other sufferers.  Having said that, there are reports that things can get worse later in the process.  I have my fingers crossed that my symptoms will not get too much worse.

The next post will contain some pictures of the current state of my skin, which I hope will be the first of many status updates (no that I hope this goes on for much longer).

Preface

Hello everyone.  Today, I figured I would follow in the footsteps of others out there, and start a record of my experiences with what I suspect to be Topical Steroid Withdrawal.  If indeed this is what I am going through, I hope that my records will not help me keep track of my own progress, but will also be a helpful resource for those in the same predicament as me, and also (most hopefully) those within the medical community trying to learn more about this little understood or acknowledged condition.

More information to follow in my next post!