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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26 thoughts on “TSW, 85 Days – Thoughts on Healing Time

  1. louise says:

    Great post. I agree it would be great if we knew when this would be over! Its heartening to see that over on the Itsan forum, long term users like Joey and Kelly have healed within 4 years despite 4 decades of heavy steroid use. Short-term users like Nina can heal in less than a year. It varies hugely.

    I am now nearly 17 months in and I think that if I got a bit of sunshine on my skin, it would clear up. We are getting nothing but cold and rain and my skin mirrors the UK climate! I also worry because I am still on the steroid inhaler and wonder if it will affect my overall healing time.

    I hope that you will heal quickly, because your use was sporadic and not too intense. Hopefully that will be good news. I think your itchies may be exacerbated by the huge stress you have been under lately. Stress definitely makes TSW worse.

    • Keep going strong! Great post! I am a 25 year strong user.Sadly I was put on TS since the age of 5.I will never know the strength of my childhood cremes.You know your usages which is not bad compared to most.You will make it to the healing list soon!

    • Thank you Louise! I certainly agree, it is wonderful that no matter what, TSW DOES have an endpoint of healing and the body is remarkable in that it can gradually undo all those years of steroid damage.

      I feel you on the climate! I am in the midwestern US and this past week was rainy and cold all week. Thankfully today we got a brilliant sunny day and I hope you get some sun soon in the UK too!

      I have been in a healing stage for a few days now and I am really happy about that. I hope to heal quickly too but I know I could go through another big flare or two.

  2. Great post. Keep going.i am a 25 year long term strong user.I am going to take a long time.You can do it!!!

  3. joey says:

    how do you eat an elephant? One bite at a time.

    On a side note a hairbrush with round plastic nubs on the end makes for a good scratcher. It can be sanitized easily thus carrying less bacteria than your fingernails.

  4. joey says:

    I thought the underlying problem with TSW was vascular nitric oxide & your body’s system basically re-calibrating itself after a long time having an external agent suppressing blood vessel dilation like a spring bouncing up after being pushed down?

    • Good suggestion with the hairbrush, Joey. I think another person talked about using a rubber comb or something like that. Yes, what you have said about the nitric oxide sounds right to me. I’m sure that a more “science-y” explanation can be found in the research papers by Dr. Rapaport or Dr. Fukaya. Hope your healing is coming along too!

  5. I have a really hard time calculating my usage, too. And I received multiple steroid injections and rounds of prednisone, and I’m not sure I even want to think about how much time those will add to my withdrawal. I am 13 months in, and consider myself maybe 50% healed. Maybe. I don’t feel good overall, though I am certainly better. I am trying not to stress over a time frame, but in moments of desperation that is what I want to cling to. Admittedly, it can be hard to see others heal much faster than I am. OF COURSE, I am happy for them, but it also can stir up feelings of doubt in my own progress. It’s really hard going through something like this blindly on faith alone.

    (sorry, this was kind of a “wop wop” comment! ha!)

    • Ha, no worries!! Glad you stopped in to my blog to ponder healing time too! I dunno, you looked really good in the pictures you posted, much more than 50% healed to me. 🙂 I have to think that whatever healing you have left to go, will really pick up and accelerate in the coming months. I just don’t think that you will need 26 months to completely heal. You are young and even though you mention receiving steroid injections and prednisone, I can’t imagine it would take that long. Even people that used steroids for 40+ years were healed or nearly healed at 2 years from what I’ve read.

      The doubt is tough. It is almost harder to wrestle with than the actual skin symptoms sometimes!! Even though I can tell I am definitely coming along in healing, I still doubt sometimes that my skin will get completely normal. Lots of people say they have the best skin of their life after finishing withdrawal and I hope with all my heart that happens for both of us, even though sometimes it’s hard to see the light at the end of the tunnel!

  6. Leslie says:

    Hi Eczema Excellence, I just came upon your website again.. I am the one who lives in Michigan and overcame this condition.. I have left the forum totally so I am not sure what has been going on with you, but want you to know that finally I seem close to 100 percent healing.. I have been off steroids for over 3 years, and I was not a heavy user at all. In fact, I never had eczema growing up or any skin problems.. but used a lot of steroids over a short period of time, and then after that, I became addicted when I had another rash develop.. I may be leaving Michigan very soon, but if you ever want to chat let me know.. I would be glad to offer any assistance I can to you….Leslie

  7. Vina Marie Plaza says:

    Hi! I have a severe atopic dermatitis… How will I know that I’m on my away to clearer skin… I have the worst flare up ever! I refused to use steriod cream named Clobetasol for 2 months now… By the way, I was prescribed with steriod creams since after highschool.. It’s been around 13 years now. I’m using unrefined shea butter for a month now… It had a remarkable effect on my skin but after I ran out of it for a week… The skin on my both legs started to flare up again.. Worst thing is that I itch all over my entire body… Can you recommend something that would stop this itch and is there really hope.. It is so embarrassing. It had affected my self-esteem as well.. I can’t wear clothes I’ve been wanting to wear such as dresses, skirts… I wish I could be normal soon..

    • Hi Vina Marie, sorry to hear about your bad flare up! So you’ve been using clobetasol for 13 years and then stopped 2 months ago? It sounds like you could be going through the same topical steroid withdrawal that I went through. There really is hope, I promise you. A year ago I felt the exact same way, and today my skin is virtually normal (but healing time can vary). As far as the whole-body itching, I found that baths with dead sea salts or with oatmeal seemed to be helpful. Coconut oil is sometimes helpful as a moisturizer but everyone is different. I have also used a Eucerin body wash for dry sensitive skin that has omega-3 oils in it. I hope this helps a little and feel free to let me know if you have other questions.

      • Vina Marie Plaza says:

        Thank you for taking the time to reply… What I have noticed is that the lesions though it had spread out on both lower legs, it is much like the first ones I had. I really pray that it will soon clear up…marks will be gone… I want to wear shorts and skirts just like the usual… By the way, I am working on a cleansing diet, too. Does topical steriod withdrawal have to be worst? And would even mean affecting the whole body?

      • No, topical steroid withdrawal does not have to be terrible. It really depends on how long you used topical steroids, on what areas, and how strong the steroids were. One general guideline I have read is that topical steroid withdrawal can be 10-30% of the time you used steroids. So if you used them for 10 years, you might have a year of healing. This doesn’t mean the entire year will be horrible skin, but it’s good to have realistic expectations that the body might take sooner to heal than you expect. Full body also depends. If you only used it on one area, it might be localized. Mine spread to about 60-70% of my body at its worst, but I had used steroid creams on my face and limbs and not just one area. But I do promise you that it will get better!! I never thought i could wear short sleeves or tank tops again when I had it really bad, and my arms are clear and perfect now with minimal scars or marks. Hang in there, you will get there too 🙂

  8. Diana says:

    Hi,
    I have been using hydrocortisone 1% cream on mg face for 3 months everyday and stopped causing me to look like a tomato on my face.
    Would you happen to guess the approx time that would take me to heal?
    I heard moisturizing during the tsw stage moisturizing slows down the heal process is that true? My face is so dry I don’t know if I should put anything on it or not. I have been using emu oil and coconut oil on my face for a bit. Do you think that’s a bad idea/ should I stop?

    Please help me and tell me what to do to heal and speed up my recovery!! Thank you 😥

    • Hi Diana,
      I can feel your pain and 100% understand you want to heal as soon as possible! Healing time depends on how long you used the steroid and its strength. The good news is that hydrocortisone is the mildest one and you hadn’t used it for very long. However, if you used it around the eye area, like eyelids, that can prolong healing time as that skin is very thin and absorbs more of the steroid cream. Generally I have read and experienced that healing time may take 10-30% of the total time you used the steroid. It can be different for everyone though. I used steroids off and on over about a 6 year period and I would say that it took me 6-8 months to be near healed, so the 10-30% rule did hold true for me. I would venture to guess that you would have the worst of it over in a month or two. Hang in there!!

      As far as moisturizing during TSW, I am not sure if I believe that it slows down the healing process. My skin was so uncomfortable without moisturizing at its worst, that I didn’t even consider going moisturizer free. I think if the emu oil and coconut oil help make your skin feel more comfortable, by all means go for it. I used grapeseed oil and then Vaseline over that when I was super dry and I think I would have healed at the same pace regardless. There is not really anything that can speed up recovery, but you can make things more comfortable for yourself while you are recovering! Best of luck to you and feel free to keep me updated on your healing progress, Diana!

      • Diana says:

        Just want to say thank you thank you and Thank you for that thorough answer you gave me. Very helpful! Best wishes to you!! :’)

      • Karen says:

        This is such a helpful response as I’m in the same boat as Diana! I used 1% hydrocortisone for 3 months and have just recently stopped. My face is awful at the moment and I’ve been desperately looking for an end date so this is great, even as just a rough guideline!

        The moisterising topic is certainly an interesting one, with many different opinions. Same with food and diet! I think the key may just be to go with what you feel is best for you, because being too restrictive will only cause you stress and will therefore prolong healing. That’s what I’m telling myself anyway 🙂

        Just as a side question, did you remain itchy throughout your withdrawal process? Because I’ve stopped feeling itchy, I’m just very very red, rashy and blotchy.

        Thanks!

      • Hi Karen! Glad I could help! The good news is that your healing should hopefully be relatively quick! I completely agree on just doing what is best for you. I think we intuitively know what is good for our bodies and what works for one person may not work for others. Focusing on keeping that stress level down is huge so it is great that you recognize that and are doing it!

        I did not remain extremely itchy throughout my withdrawal process. The first few months had the very insane itch, but then it started really dying down. The itch also would come and go in my healing stages of TSW. Everyone’s path is different of course, I think the fact that you stopped feeling itchy is a good sign, be forewarned the itchy feeling may return but it will be less and less and less as you heal! Sending you good vibes for a continued speedy recovery! 🙂

      • Karen says:

        Thanks so much for your kind words and good vibes 🙂 You’re so sweet to help out us poor souls who are still going through a rough time. Hope you’re having an absolute blast post-TSW!

  9. Vina Marie Plaza says:

    Hi! Just an update! I’m OFF the steriod cream since january.. Technically, it’s been 4 months now. The last major flare-up I had was in February. There are marks left on both lower legs but over all I don’t have flare ups anymore for the record. I still do get small blister-like bumps at times. What helped me get rid of those is a product which has herbal and salicylic acid content. I believe it’s only availble here in the Philippines. It’s called Fungisol. I also use organic products for my skincare. The marks, by the way, are slowly fading. The skin is much healthier now. I know I got a long way to go but looking forward to a normal skin. Hopefully. I know it’s impossible for atopic skin but at least keep the flare ups to a minimum and less severe degree.

  10. Diana says:

    Hi,
    I had eczemaon my face so I went to the doctor and he gave me hydrocortisone cream. I’ve used it for 3 months and stopped now my face is red dry and itchy as hell almost all over the face. I have been reading up on tsw and I believe I have it. But today when I went to the dermatologist he said that its moderate /severe eczema and gave me protopic cream.
    Idk if I should believe him cause he might be wrong… But

    If I actually have tsw damaged face and used protopic on it, will it make my face worse?
    What are the effects of protopic (if you know) and do you think I should not use it and use something else (like oil or serum) or should I listen to the derma and use protopic??
    And if you happen to know about this cream do you know if you can get an addiction to it??

    • Vina Marie Plaza says:

      What I know is that Protopic is an immunosuppressive drug… It might help though but I suggest to use it for the given time alone as precribed and try to search on natural products that would really help minimize flare-ups or the condition of the skin itself. What should we aim for is healthier skin that means good elasticity and well-hydrated. I think that makes a difference but the search for what really works is the battle. Have you tried pure argan oil/ rosehip oil on the lesions?

      • Vina Marie Plaza says:

        What’s working for me is drying up the lesions first and moisturizing it out really well.

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