2 Month Revisit: Topical Steroid Addiction Symptom List

Even though I’m now writing this blog as mainly a TSW blog (it started as an eczema blog, clearly, but eczema and TSW are very different in things like their care, affect on life, moisturizers needed, etc) I still sometimes had this horrible thought:

“What if I don’t really have TSW?  What if I just haven’t found what I’m sensitive to, and will never find out, and am doomed to live with dry, painful, red, markedly imperfect eczema skin forever?”

It’s hard not to think that sometimes.  Even with all the concrete evidence out there, the firsthand accounts and the marvelous stories of people healing, TSW is just so wacky that it’s easy to get a little crazy trying to wrap your head around it.

Then I think of all the things I tried that did not make any noticeable difference in my eczema.   I think of the pictures online from other sufferers that look so much like me.  I think of the ITSAN forum and how I nod in agreement and identify with so many posts there.  I think about my history with steroid creams and things always coming back worse after the latest rounds this winter.  I fit the description to a pretty good tee.  I bring myself back to calm reality by thinking about Dr. Rapoport’s studies on TSW, all starting with eyelid dermatitis (which is, incidentally, where MY rashes also started as an adult and was the first place I ever used steroids).  EVERY SINGLE PERSON in his study that stopped all steroids was eventually cured.  That’s a 100% success rate.  You cannot beat that.  The only people that were not cured were….. the ones who kept using steroids.

So about 5 weeks ago, when I was less than a month into Topical Steroid Withdrawal, I wrote this post discussing all the symptoms and noting which ones I have.  I’m no TSW marathoner in that I’ve only been at this for just over 2 months, but my answers to the symptom list have markedly changed.  If I wasn’t convinced I have TSW from my answers to this list before – I am now.

(The following symptom list is courtesy of ITSAN.org).  I am putting my responses to the answers in bold after they are listed.

Q: What are the most common symptoms of topical steroid withdrawal?


These symptoms occur after you stop using topical steroids. You may not experience all of these symptoms, although some people do. You may start experiencing some of these symptoms within days of stopping topical steroids; other symptoms may take longer to occur or may not occur at all. You may experience some of these symptoms throughout the entire time or you may only experience them during flares.

  1. Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads.
    Guess what.  I do now have the red skin that stops at the wrist.  It is pretty faint, but I have it on both arms.  You can clearly see the demarcation in the picture below and the tiny strip of “normal” lighter colored skin just before my palm starts.  The skin is also red on the tops of my hands.  Some people have an entire red hand, fingers and all, but my fingers are pretty much spared, at least on my left hand.   I also definitely had red burning skin.  My elbow and knee creases specifically would burn and feel like they were sunburnt, making it painful to move them.DSC00746

 

  1. Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth. 
    YES!  Oh my goodness.  I scratched clear through the skin some days and turned it into an oozy mess.  You could have pointed a gun at me and I still would probably be itching.  Sometimes it felt completely uncontrollable.  I actually had my hands cramp up many times because I was using them to itch so much!!
      This is getting much better though.

 

  1. Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.
    Last week I had a first.  I had to vacuum out my bed!  There were so many flakes in there that I figured it was the best thing.  If I wore dark-colored clothes to bed, they would be covered in flakes when I woke up.  This is getting better too, but I still am reluctant to wear a lot of dark clothing.  At work during the day I often escape to the restroom and scratch to my heart’s content, leaving little flakes in my wake.  I liked the image from PinkLikeaBeacon’s blog, who said something like “The cleaning lady probably thinks I’m eating saltines in the bathroom stall due to all the white crumbs all over the floor”. 

 

  1. Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.
    This is really the only symptom that I haven’t had (yet – anything could happen).  My fingers and hands have felt stiff sometimes, but have not swelled.

 

  1. Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.
    The worst site for oozing was my groin.  At peak badness, I also had mild ooze on my neck and my face (forehead and around eyes).

 

  1. Itchy skin. The itch is unbelievably intense and feels like it originates under the skin.
    Why yes, yes, I had that.  Please see above, #2.

 

  1. Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.
    Absolutely yes.  Sometimes my skin felt exactly like a sunburn.  Again, the worst parts for this symptom were elbow and knee creases.  On the worst days, the simple sensation of clothing touching them was aggravating.  I can see how some TSWers just laid around naked when they could.

 

  1. Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin.
    I did have and still have spreading rashes.  I mean, the rashes I have currently are no longer spreading, but when everything exploded, things spread to places I had never used steroids or only used them maybe a handful of times, like my groin, stomach, and lower back.

 

  1. Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.
    Absolutely.  I would get these ‘shaking chills’ where I was cold and could not stop shaking.  I always have had cold feet for the last 3-4 months at least.  I would wrap them in towels warm from the dryer, but STILL had trouble getting warm, and they felt like ice.  I attributed it just to winter, but come to think of it, yesterday we had nights that were 20 degrees F, like very winter-like, and my feet were not especially cold.  This could be another sign of improvement that my body temperature can regulate better.  I haven’t had the ‘shaking chills’ in a couple weeks and it has been just as cold around here.

 

  1. Exhaustion.
    Oh yes.  Some days I was completely pooped.  That was why I had to go back to coffee here and there.

 

  1. Insomnia or difficulty maintaining a normal sleep schedule.
    Affirmative here too.  Things have gotten a LOT better from a few weeks ago, where I would lie awake until the early hours and I just could not get to sleep.

 

  1. Loss of appetite
    Oh, besides the edema, this was another one that I didn’t have.  I like my food.  Good thing I have a decent metabolism and now am feeling up to exercising again, because I feel like I am always hungry and always eating now!  Who wants to come with me to the all you can eat buffet?? 🙂

 

  1. Very, very dry skin that has the look and feel of plastic.
    I get the “plastic-y” skin around my eyes especially.  It will be really shiny and dry and feel like there is this layer of skin that I need to break through in order to get to the healthy, living skin underneath.  Sometimes I can pick off this layer in little peels like you would peel off a sunburn.

For the TSW friends out there…. when were you convinced that you had TSW?  Did you have most, if not all, of the symptoms on this list, and which ones were your worst?

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32 thoughts on “2 Month Revisit: Topical Steroid Addiction Symptom List

  1. tomatoskingirl says:

    I was convinced as soon as I saw the pictures on ITSAN. Still on my third week only but I’m experiencing most symptoms now, except for the edema, the oozing and the appetite one. I have experienced edema in my feet in the past though during a really bad flare up and had no idea what caused it back then. That was really scary, but no sign of it just yet. Just started having the sleep difficulties this week too.

    • Oh I can imagine the swelling feet would be scary!!! I am really thankful I haven’t had that one. I hope you don’t have too bad of sleep difficulties. I started having trouble sleeping around the same time, 3rd/4th week, but just recently around the 7th/8th week mark it really started getting better.

  2. Louise says:

    Wow, the amount of times I have felt exactly the same way as you! When I am flaring,I always seem to go into “doubt mode” I guess it just stems from the fear of being stuck like this.

    So….things that convince me…well, the red sleeve is a good one. It is so different to eczema. Dr rap also says that eczema does not burn, so burning skin is definitely TSW and the nitric oxide in the blood.

    My history with steroids was undeniable. I used stronger and stronger creams which stopped working.

    Dr Fukayas online book is also great for looking at improvement pictures. I like to look at them when I feel sad.
    X

    • joey says:

      Dr Fukaya mentions in his notes that with some people he slowly lessens the cortisone dose instead of going cold turkey from the begining. Which interestingly is the opposite to Dr Rapaport

    • joey says:

      I also some times doubt & say things like ‘what If I don’t work and suffer through this for 3 years and nothing comes of it.’ But I also think of all the things this chronic eczema has cost me. for me I feel it’s worth the risk. I basically lost my 20’s to it.

    • Louise, do you have a link to the online book of Dr Fukaya? I know i have looked at some pictures from him before, probably linked from an older post on ITSAN, but i’ve not been able to get into the ITSAN forum lately. Another thing is that eczema doesn’t blanch. With my reddest areas, like on my stomach and hipbones, I can rub or press a finger into them and see those areas turn normal skin color for a second. So besides the burning that also convinced me this is not ‘normal’ eczema. It’s comforting to know that you have felt the same way with being fearful and doubtful! I check your blog frequently and it looks like you are really coming along with your healing which is wonderful!

  3. Amanda says:

    I’d probably question it too because it’s just how I am, but it really sounds like that’s what it is.

    Every time I see this list, I wonder if it’s what I went through as a kid, when my eczema was at it’s worst, because it describes it so closely. I hadn’t been on TS before though, just oral steroids. And my eczema didn’t go away after, but it certainly improved. Hmm.

    • There are a lot of people on the forums that used oral steroids, like asthma steroids and prednisone and this happened to them. So I don’t doubt that maybe that’s what happened to you as a kid. Then again, it is said that people “outgrow” eczema and there was no existence of adult eczema before topical steroids. So either it was TSW or you just plain outgrew it! Either way I am so glad you don’t have to deal with it now as an adult!

      • Amanda says:

        I still have to deal with the eczema but at least it’s not as bad. After the REALLY bad part, which was about 2 years, from when I was 8-10, I had it all the way through my teenage years and into my early 20s. Now, I still have it really badly on my feet, and badly enough on my hands for people comment on it, at least. (I didn’t think it was that bad, but other people seem to notice!) Sometimes I still get it in the creases of my arms, and my wrists too. But STILL, it’s nothing compared to what you’re going through right now. I do not envy you at all and am amazed that you’re going through this and still keeping a relatively sane mind! 🙂

      • Well thank you!! 🙂 Do you still use the Clobetasol on your feet, out of curiosity?

      • Amanda says:

        I do use it on my feet and hands off and on. Sometimes I use Protopic instead and sometimes I just use nothing. After all the TSW stories, I’m scared to stop using it, though I’ve definitely gone at least more than a week without it.

  4. joey says:

    I have the exact same thoughts, & i ran myself against the ITSAN.org checklist. My swelling is the same. I got it on my eyelids, ears. But strangly too I got the stiff hands and fingers. I haven’t gotten any chills.

    I swear to got I’m not making any of this up.

    • Joey it is so disheartening to hear that you lost your 20s to eczema. Those are great years and I SO wish you could have them back with good skin. I was being selfish and thinking about how I lost a half year to eczema so far with just having really crappy skin and very few days where I actually felt good about myself, but in the grand scheme of things it is not that bad. I am lucky and you are lucky too for finding out about this journey and doing the right things to stop all steroids and heal. I know you are not making it up as a fellow sufferer and I am glad you can come to my blog and share your perspective, I am here for you!

      Interesting about the differences between Dr. Rapoport and Fukaya with stopping steroids cold turkey vs. weaning. I have to read more but I would wonder if the weaning is for people that have been on strong steroids for many years, just so their skin doesn’t completely go berserk.

  5. joey says:

    except my appetite hasn’t diminished, I’ve probably put on a few kg’s

  6. Mie Ululani says:

    …still can’t believe how nasty those steroids are…keep up your awesome work! this is inspirational i wish i documented my journey in real time like you.

    • Thank you Mie!! I wish you had too because seeing the stories and photos of other people healing has honestly been the BEST and most optimistic thing for me. But knowing your story with battling eczema and seeing your vibrant spirit now is just as good and encouraging 🙂

    • healingtatiana says:

      Hi! I have a daughter that has suffered with ecZema her entire life. Donia mentioned you so j would really like to get in touch with you so Since you inspired my 12 year old daughter during this difficult time.

  7. I knew when I found the ITSAN website. I was in withdrawal, unknowingly addicted and had all of those crazy symptoms. so when I read the story.. I believed 100%. I think that my 100% belief in this is what has kept me sane. I can’t imagine how people do it with doubts.

    • Yes, I doubted at first, like in the first month, but as things kept following almost the exact path everyone said (oozing, spreading rashes, etc etc), I knew it for sure. Someone commented on another post asking why don’t I go see Dr. Rap. Well, it wouldn’t be worth it for me to fly across the US to have him tell me something I already am completely convinced of, lol!!

  8. The first place you ever used it was on your eyelids?!?! Wow, luckily I’ve never had to use it there. I try to use my steroid ointment as little as possible (desoximetasone), but I still use it anywhere from 1-5 times a week; only on tiny areas. I really feel for ya while you’re going through this 😦 100% success rate though? WOW, um that’s awesome.

    • MummmyD says:

      I’m scourging all info in the web
      Will u let me know how you handled the itching and oozing in the eyelids?
      My 3 yo son is on his TSW after topical and oral steroids
      Thanks heaps

      • Hi MummmyD – The itching and oozing in the eyelids was really hard. Thankfully my eyes didn’t itch TOO badly and I had the self-control to keep my hands away from them. I’m sorry to hear that your little son has to go through this. Not sure where you are located but I found that Avene’ Tolerance Extreme cream was very mild and seemed to help moisturize and soothe without causing further itching to the delicate eye area.

        Also I am not sure if you have been on the ITSAN forum, but everyone there shares their experiences with topical steroid withdrawal and I am sure there are many posts about eyelid oozing and itching that may also be helpful. Good luck to you and your son, let me know if I can help or answer anything else!

  9. When I first found ITSAN, about 13 months ago, I thought TSA might be what I was going through since it described so many of my symptoms down to a T. The only reason I didn’t latch onto the idea in a heartbeat was because I had been searching for an answer for 3.5 years to no avail, and honestly thought that my life was just going to be like that forever. My derms and allergist told me everything was due my genetics, and what’s a person supposed to do but believe what their team of university doctors is telling them? A month later is when I quit the steroids, and visiting Dr. Rap in July helped me confirm that TSA really was the problem all along. I STILL have doubts, however. I’m over twelve months into my withdrawal, and I’m not healed yet. It’s hard to keep the faith sometimes.

    • Oh Katy! I am sorry to hear that you had to search for over 3 years for the answer and that the answers from the doctors were pretty hopeless. Nothing more discouraging to hear that “this is just the way you are, you have to live with it”. I was convinced of that myself and I’m so glad I found ITSAN and didn’t have to spend any more money on doctors. How long did you use steroids out of curiosity, and did you use pretty strong ones and/or use them all over? I’m just always curious to hear other people’s histories when they are healing from TSW as a comparison. That IS discouraging to hear that you’ve been at this for over a year and are not healed yet. Have you seen some good improvement at least?

      • What’s sick is that I used the creams more in the 3.5 years when I was (unknowingly) addicted than I had in my entire life before that. They were just the ONLY thing that helped even a little bit, which of course is why so many of us became addicted in the first place. UGH! I’m about to turn thirty next month, the vast majority of my steroid use is from the last ten years. I used minimally as a child and teen. In my early twenties I broke out due to a reaction to some sunscreen I believe and then got into a sick rut with my eczema for a little over a year. During that time I used mid and low potency topicals, took rounds of prednisone, AND had about five cortisone injections. Then my skin cleared up for two and a half years. I would get the tiniest little patches here and there and would always just use my steroid to zap is whenever I wanted to. When I was 25, I broke out all over due to a reaction to paint fumes, so I slathered myself in OTC hydrocortisone. This is what triggered my addiction. Suddenly, my “eczema” was no longer eczema as I knew it. I tried EVERY treatment — two different UV therapies, cyclosporine, methotrexate, protopic, and various steriod creams. I pretty much used a steroid somewhere on my body every day, and by the third year of this, I was using a lot more of it. So, LOOONG story short, I know I have a longer withdrawal ahead of me than some. I’m guessing a little more than two years is my timeline. And yes, I AM better than I was a year ago. There are definitely positive changes that I need to remind myself of! So sorry for the book I just wrote here…it’s a rather complicated question! haha

  10. @ Katy – Not at all! I really appreciate your detailed reply! The good news is that you’re still young and now even if it does take you another year to heal, you will be able to enjoy many many years of good skin. Seems like most of us adults start with some sort of allergic reaction to something and then we use steroids and are drawn in by their magical healing power; that’s how I started too. You are inspiring for being a year in to topical steroid withdrawal and I am optimistic that the next year will bring you continued and complete healing…. hopefully sooner than you anticipate!

    • Vade says:

      Hi there,

      You mentioned that you had that very very dry plastic-y skin, akin to a layer of skin, around your eyelids. How did it go away? Did you had to use an exfoliant like salicylic acid or did it just resolve by itself over time?

      • Hi Vade. I did use a very gentle exfoliant every day to get the dry layer off my face – I would use olive oil mixed with very very finely ground oatmeal plus warm water and exfoliate with that. Like I would mix all three and make a sort of paste and put this on my face as a mask and then rub it around and rinse with a washcloth. And then sometimes I could actually take tweezers and peel little layers of that dry skin off, like it was a sunburn. But over time of a few months this resolved itself.

  11. So here I was thinking maybe i have tsw and guess what.i randomly got eye dermatitis when this all first began! Then after steroids (Ugh! ) it went but was back within the year full throttle!! Note my neck and face are so bad and do match some of the gallery photos. (Wrinkled, rough, red skin and so sore) plus I’m always exhausted!

    • That’s just like me, my whole battle started with eye dermatitis too. And mine of course got better with steroids but then returned with a vengeance. You can feel free to contact me with other questions about TSW, etc by email if you wish, my email is: nubtorious @ yahoo.com

      • Thanks. I will email you at some point 🙂 you’ve got a great log of everything on your blog though. It’s a great read for those going through tsw. Hope everything is looking up though 🙂

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