Monday, November 17, 2014

Update on My Topical Steroid Use - Don't Do It!

After 15 months of not touching topical steroids and going through hell I used them again twice over the last 2-3 months very sparingly for about 4 days both times. I thought since I had been nearly fully recovered in the last 5-6 months that using a tiny amount would not set me back at all. I was wrong. It's been a full month now since round two, and although my skin didn't revert back to day one of my tsw, I have had steroid induced eczema show up on my right arm, an area I have never used ts on, and an area that has been 100% clear for 6-7 months. I also have experienced that dreaded bone deep itching again on my right hand that had been gone for many months. The itching has subsided now and things seem to be settled down, but I can definitely tell there is a very real connection with cellular memory. A couple people warned me about this possibility and they were right. Kudos to you guys, you know who you are.

The net result of me using again is basically a set back of healing since I first used again back in early September, and on top of that, a loss of about 3 months of healing time. Now I have to bite the bullet and not use again, ever. I have no regrets what so ever though, and would do it again if the same situation presented itself. But, not many situations would make me want to lose 3-4 months of healing time.

Dr. F suggests people can get through tsw using systemic steroids, but I wouldn't go there myself after this experience. What he has said makes sense, since oral steroids do not affect the skin the same way topicals do, but there are unknowns I don't want to find out. Not to mention the risks of having a lowered immune system and other associated problems that go along with systemic steroids. Now, if I were a much worse case, and it was from ts use only, I might consider it. Luckily I'm not and won't.

For me, it's been very difficult recovering due to not being able to use my hands for so long. I have to be able to work and make a living, and it was all but impossible for me to do that the first several months of my tsw. Anyway, my hands are a little worse than they were at the end of August before using that first time in September. Having 100% healed hands was a nice break. I had only experienced this at my one year mark when I was healed for two weeks. So, it was really nice to feel normal again both in September and again in October. I used a second time so I could do a trade show. Again, I have to work. I've used up all my savings and have gotten far behind financially due to that first year of debilitation. I have another two week show to do coming up very soon and I will not be using ts for it. I will do the show even if I'm bleeding all over the place and my hands are sore and swollen. Fuck topical steroids! And fuck the people who make them, prescribe them, and push them. God damn the pusher man. Can anyone tell I'm sick of this shit yet?

So, the jury is in with my experiment on myself. I have to warn you, do not try it. Not only does it make things worse after the initial fast healing subsides once you stop using, but it is even more apparent to me just how dangerous these drugs really are. So, if you want to use for a special need like I did, just know that 1) it will set you back months in your healing, and 2) it will make you very tempted to use over & over again. I can handle the temptation but can imagine others may not. So please take it from me and don't even go there.

51 comments:

  1. Oh no! Sorry to hear that Dan! I hope it is over quick for you.

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    1. Thanks! Me too :) My theory made sense locally, but not in practice. Obviously these drugs affect the body in a much more harmful way then I ever imagined. I just recently told Dr. F about my reaction to using ts a couple times and asked about using systemic steroids. Here was his answer:

      "I recommend you not using oral ones because you seem to be doing rather well at present.
      Oral steroids are hard to cause cutaneous addiction like topical ones but easy to cause psychological addiction. Some patients try to take only for a few days at first but tend to use continuously for over years. I think you are only tired with repeated flares which will be weakened and disappear as time passes."

      So, this confirmed what I had kind of already figured out. It's cold turkey for me the remainder of the way.

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  2. Damn man I'm so sorry you're going though this BS again. The people that manufacture and distribute these drugs know the consequences very well so yh Fuck 'em. There's a few people actually considering using these creams/pills again because of Dr Fukaya, not to discredit the great man but the only explanation I can give regarding his statements is that people must've misunderstood it. Just keep ya head up because you've already proved your strength. You've seen how much your body can heal so just give it time brother. Hope the Hawaii trip was great :)





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    1. Hi Moh, how are you doing? I hope well. Nice to hear from you. Thanks for the words of encouragement! The trip was fun and worth the extra suffering regardless. If I had to do it all over again I'd do the same thing. I'd rather suffer a few more months with tsw than risk getting a deadly infection from the ocean. And, there was just no way I was going to cancel that trip a second year in a row and lose $1,300 in airfare. I have a lot of respect for Dr. F and realize that none of us are perfect, so I don't hold anything against him for anything. Wish I could say the same for other doctors I have actually paid for their services!

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    2. You're very welcome Dan. I'm still marching through the fog and probably got a lot of time left in it.. I'm glad to know you enjoyed the trip :) , God knows you deserved it mate. This condition really puts things in perspective. If only there was a receipt that came with the pointless consultations and drugs given to us lol.

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  3. Hang in there buddy!! Just please throw all the steroids away so you won't be tempted to use them ever again.

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    1. Thanks Geanna. I just had my worst couple of days in many months! Had to take my first dss bath yesterday in over two months at least to help heal my fingers that I scratched to the bone. Talk about sore! However, I awoke this morning to the soreness gone and in much better shape :)

      I have had many tubes of ts sitting in my house since day one of my tsw and would never touch the stuff unless I was willing to suffer the consequences. After 15 months a need arose to clear my skin so I used knowing full well there were unknowns. Granted, I didn't expect the rebound to be as bad as it turned out, but I have no regrets. And, even though I have a two week show to do beginning next week, I won't use the ts to clear my hands for it like I want to now that I know what consequences I will suffer from it. I will do the show with bloody hands if I have to.
      Based on this recent experience I wouldn't ever use unless it was for a short period for something very important to me. And I would go into that knowing full well it may set my healing back by several months. I don't see that ever happening again. Not my cup of tea.

      I hope all of you learned something from my little experiment on myself. Believe me, don't even think about using steroids. It's not worth it unless you're willing to suffer a huge setback. One to two weeks of clear skin is not worth months of agony. It was for me only because of a special situation. If I had to do it over again I would have just stayed out of the water and not done them. But, I'm not going to sit and wish this or that. What's done is done and it's valuable information for those of you who have contemplated using ts sparingly near the end of your recoveries. And for those who may wonder if it would work. It doesn't.

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  4. Please google Vitamin D and Vitamin K, to help your eczema heal faster. Visit: the Vitamin D Council (website) too. I take 5,000iu of Vitamin D (per day) with 400% rda of Vitamin K2 (per day.) You have to take K2 if you take Vitamin D. K2 carries calcium away from your arteries and into your bones, your skin, hair etc... If you don't take K2 (with it) you can get Vitamin D Toxicity (although this is rare.) It's like being in the sun all day - your mood will improve greatly. The skin on my body is completely healed. [I started taking 1000iu of Vitamin D and built it up over a number of weeks (until it was 5,000iu.) 100% rda of Vitamin K2 per 1000iu of Vitamin D.] Although I take a little less: 400% of K2 with 5,000 iu of D per day.

    Research it online. I am not a doctor and you shouldn't take this as medical advice.

    The skin on my face is very red, but I am only just starting TSW. I'm hoping the Vitamin D will help me through the worst of it. Good luck.

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    1. Already have done that but thanks. The vit D will help, be sure it's D3, as that is the one you want. But, there is a whole lot more to this than just taking vit D3. Trust me on that.

      My top weapons of choice are, drugs, dss baths, and tto. Good luck in your healing.

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    2. Thanks for replying. I'm five days into TSW. My face has been weepy and red on a night, and I'm waking up with yellow patches on my skin. I'm using no mosturiser as I learned long ago that any mosturiser will clog my pores and make my face red and weepy. In the past I would run to the steroid creams at the first sign of yellow and redness (my doctors encouraged this) but not any more.

      I take Calcium, Zinc, Vitamin D, K2, Garlic tablets and Omega 3 (from flax seed capsules.) I also eat a lot of oily fish, drink veg smoothies, cut way back on sugar, avoid eggs, milk and gluten. Been suffering with red, weepy skin for twelve-years now, every time I stop the steroids but only just found out what it is! Very angry with my specialists. I've made them a DVD of ITSAN video and suffers. Let's see what they have to say about that!

      How is your skin Dan?

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    3. I forgot....my skin has been flaring off and on ever since I used ts again back in September. I really felt that using a very tiny amount of ts again after 15 months when I was nearly 100% healed would be relatively safe, with only a minor setback. Wrong! It set my body back to nearly what it was like when I first started tsw. I had to go back to wearing gloves again on & off to protect my hands. I get them to heal and another flare hits and it all starts over again. I'm currently back to healing again. It is so similar to the beginning of my tsw it's uncanny. The only saving grace is it isn't near as bad as back then, and it seems to be a much faster healing process this time around. It's like doing tsw over again, but the symptoms this time are far less severe in intensity. And, it feels more like a movie that's on fast forward the way my body is acting. In other words, I feel like I'll be fully healed here in a couple of months. Again, this tsw is similar to my first one. The key difference is it seems like the process is in fast motion, whereas the first tsw was a much slower process. I hope that makes sense. I tend to repeat myself a lot. Kind of like I'm doing with tsw lol.

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  5. I don't think a lawyer could prove it, sadly. Their lawyers would argue that your skin turned red and weepy because you have eczema, and you stopped the medication. And in time your skin healed itself but it wouldn't for everyone. Total BS, but proving TSA would be incredibly difficult.

    Steroids are definitely poisons. I used to feel better every time my skin was bad (in myself), I told doctor's this and they shrugged their shoulders. I now know this was the drug leaving my system, the toxins etc...

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  6. I wrote a post on the ITSAN forum about moisturiser withdrawal and they removed it! They also warned me and said I was giving out medical advice. What a joke! Last time I post there. Sadly they won't let us help their members. They are delaying their own healing by clogging their pores, which in turn makes the skin tight, red, inflamed and weepy. Well, I don't have to tell you this...

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    1. There is a great tsa/tsw forum at:

      http://forums.nomoresteroids.com/

      Why don't you come join our forum and post what you want! Most members of our forum don't believe in using moisturizers.

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  7. Hi Dan,

    Latest comment ever, I know... Sorry to hear about your 'relapse'! And thank you for being the guinea pig for all of us. I was wondering how your experiment turned out as I discovered an old batch of topicals while I was moving, but now I will definitely throw that in the trash! I'm still chugging along as well, with pestering spots on my fingers but I will prevail. Hopefully life is not treating you too badly at this point since it's 2 months after your post, and at least you're armed with the best methods.

    Megan

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    1. Hi Megan, so nice to hear from you! I'm glad you appreciate my experience as I do others as well. That is what the bogging is for (for me anyway), to share experiences so we all can learn from each other.

      That was a major setback I did not expect to be so severe when I used just a minor amount of ts after so long. I continued to worsen and the bone deep intense itching that had been long gone came back for awhile. Hands deteriorated pretty badly, steroid induced eczema broke out in several places, even places I had never had it before, or used ts on. It was really weird because it was like doing tsw all over again, only in fast forward. I healed quickly after a month or so of regressing, and am now completely healed to the point where I was at my one year mark when I thought I was healed.

      No skin breaks what-so-ever! I feel completely normal now except I can tell the skin barrier in my hands where I slathered the poison on generously for two solid years is still not 100%. I want to post a 100% healed post with pictures but decided to wait a couple more months to make sure they don't break out again first. I made the mistake of using soap way too soon at my one year mark and won't be repeating that mistake!

      I'm deathly afraid to use soap on my hands at all and won't for at least two more years. I wash them quickly in cold water with nothing about once or twice a day, and wear gloves if I'm going to do anything that will get them dirty, so I never need to use soap. I haven't done a dss bath in weeks now. I actually haven't had a bath or shower in weeks. Just been wash clothing it. Last two times I did a dss bath it made me break out when my hands were almost as healed as they are now. So, I've learned the baths are only good for the first 1/2 to 3/4 of the journey when the skin is really broken. After the skin regains some semblance of being healed the dss baths seem to irritate it. I have my dw wash my hair with shampoo about once every 2-3 weeks. I never have had any scalp issues and the shampoo doesn't bother it. As long as I keep it away from my hands I'm fine. I have been wanting to take an acv bath just to soak my body and get clean again but have been putting it off for as long as I can take it. Today might actually be the day.

      I'm tapering off my drugs now and finally able to sleep without taking drugs as of just a couple weeks ago. It's been a slow process but it feels really good to put this behind me. What a horrible experience this has been! I never imagined when I started tsw it would be like it was. I wouldn't wish it on anyone.

      Are people really still using moisturizers? God, I hope not. My entire journey was so much easier when I stopped using moisturizers on my skin at about month 3. I mean it was really very difficult and quite maddening. But, when I was using moisturizers it was 100 times worse than that! I can't understand why people would do that to themselves but know people still are. It's really quite sad. Stay dry!

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    2. That regression sounds terrible. I was just recounting my experience to someone about the awful itch that I experienced during the recovery and I definitely don't want to relive it. So sorry you have to go through it again!

      HAHA! It's as if you were speaking with me with your last paragraph. Alas, vanity got the best of me and I jumped back into moisturizer/makeup routine perhaps a bit too early for the skin on my face. I went a good 2 weeks. However just yesterday and today, I'm dealing with a recurrence of inflammation of my facial skin and chapped lips. My body skin does seem to be healed though as it doesn't get inflamed from moisturizer but I'm definitely more sparing for my limbs as they're mostly covered anyway. The daily moisturizing on my facial skin was really a bad idea as the inflammation and lack of integrity has returned, though definitely to a lesser degree. Those pictures of people just slathering vaseline on red flesh is just terrifying and they should know there's a better way! If only information could penetrate certain organizations (cough) without bias.

      DSS baths still do provide me with some relief though as my skin is kind of not healed over, though there's not many actual cracks, but it does seem to be a fine line of relief vs itch. At my best, there was no benefit so I reverted to showering, but at this moment I'm back to 2x a week until my face gets better.

      Hopefully the worst is over for you and you'll be back where you were again soon. Be well!

      Megan

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    3. I talked to Dr. F about it and he told me to not use soap for two years AFTER I am completely healed. I know why now and wholeheartedly agree with him. However, I find I can use soap on areas where I never used ts with no problem. Example: shampooing my hair. I've done that every few weeks since day one with no problem. Just can't let the stuff touch my hands. Unfortunately, I have to use my hands if I am to use soap anywhere so I can't use soap unless I have someone else do it for me. That is why I continue to soak for 20 minutes in a bath whenever I want to get real clean. I should mention too, I only use a very natural soap and shampoo, and even with the natural soap my hands still dried out from it and broke out again when I used it for two weeks a few months ago.

      I have found that people just don't believe moisturizers, lotions, etc harm their skin and are brainwashed into believing the stuff actually helps dry skin.....just the opposite imo. I believe those things are the main cause of dry skin. I see it in my dw in how she applies moisturizers to her hands because they are "dry". I keep telling her they are dry only because she has been compromising (weakening) her skin barrier for too many years with the very things she is trying to get the dryness to go away with.

      I am actually 99.9% healed now. No itch, no broken skin, no rash. But, I can tell my skin barrier in my hands is not fully recovered despite the appearances. When I feel it is, I will post my final healed post with pics. I jumped the gun before so want to make sure this time. Best to you Megan!

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    4. Hi Dan, how is your skin in terms of dryness? Do you think it will always be dry even after it has healed? Will you ever use moisturizers again? And if not aren't you worried about wrinkles? I have seen people go back to moisturizers after they are healed with no problem. I would try one bit by bit, the forehead, then the nose after a week etc...

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    5. Hi S.C. Lee, my skin is normal in terms of dryness now. The key for me is to stay out of water and not to use soaps when I do get in the water. I want to be oily. I'm actually quite afraid to take baths or showers very often and only take a bath about every 3-4 weeks. Different stages of tsw call for different protocols.

      I have never used moisturizers until I joined a certain forum I won't mention the name of ( ITSAN) . I used them for about three months and will never use them again. It took me three months of agony to figure out what was causing the agony. The worst thing a person can do when doing tsw is to apply moisturizers on their affected skin. In retrospect it is all very obvious.

      Wrinkles, I could care less, I'm not a vain person. People who use moisturizers are damaging their skin barrier, and subjecting themselves to plenty of potentials health problems. How is your face? How many months into tsw are you? I hope you are doing well.

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    6. I'm a month into it. My facial skin (where the problem is) is white again with a few dry areas. Sometimes it gets red throughout the day. Most of the cuts have healed, although I am aware that it could flare again.

      I took your advice and turned down the hot water, to lukewarm showers. I still need showers atm, as it is early days but I hope to reduce them later on, as you have.

      I am Jazz_Enfant on the forum. Glad you're doing so well :)

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    7. Hi Jazz, I think most would consider the first month the hardest so it sounds like you are doing good. I have to wonder how much easier it would have been had I not ever put moisturizers on in those first couple of months. I imagine I would have saved myself a lot of pain.

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  8. Most definitely. My skin showed signs of healing within a week, took a couple more to stop flaring up and down, once I pushed past the initial redness and weeping. In the past at the first sign of this I would reach for the steroid creams. This is what doctor's told me to do, and as a result my facial skin is very thin now. Bastards. Who would have thought, all we needed was water and time. Although, I am not out of the woods yet. Sugar still makes me itch! So my skin is still very sensitive.

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    1. Things I found that increased itching the most would be alcohol. After that, fermented foods like cheese, pickles, etc. And of course, sugar. For all intents and purposes, I'm healed under a year and a half. I wonder what the itsan vets would have to say about that. A one off maybe. The exception to the rule lol. I can only wonder. I wish they would show their faces here and debate me on some issues but they are afraid of the truth.

      Best advice I have ever heard from a doctor was a few years ago after a neck surgery. On a follow up visit I asked the surgeon if there was anything else I should keep in mind and he said, and I quote "yes, stay away from doctors". He was a cool guy and was never afraid to speak the truth.

      So, here I am a year and a half into tsw and healed (again). I'm 59 years of age, smoke cigarettes, eat sugar and ice cream like nobody's business. I eat potatoes and dairy every day and always have. And I managed to heal from a very severe tsa/tsw condition. Go figure. I imagine if I had quit smoking and put myself on a good diet I would have healed much quicker. What was the key to my relatively quick healing? No moisturizers, dead sea salt baths, tea tree oil, sunshine. Oh and I exposed my skin to direct sun from the very first day. Those that say to stay out of the sun need their heads examined. As long as one is careful to limit their exposure it's perfectly fine and very helpful. Nearly everything I learned at itsan was dead wrong. Oh well. I'm just happy to be free of that terrible condition with the pain, intense itching, sleepless nights, and on & on. So happy to live normally again! Can't wait to post my final post with pics and be done with blogging as well.

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  9. Hi Dan, Thanks so much for all the info on your blog, and I hope you're healing well from your last round of ts usage. I'm going to throw away my ts...not really sure why they're still lying around! I had a terrible flare on my face about 8 weeks into tsw whilst using greasy moisturisers, and figured that they were actually slowing down the healing process, so I started mw a couple of days ago. The skin on my body has become quite dry, but not too problematic, so I just did a dss face-and-neck-bath yesterday. It was incredibly painful (screaming, grunting pain!), however the relief afterwards was obvious. I have some little cracks around my mouth which I'm treating with tea tree oil, as also per your recommendation. I'm so thankful there are blogs like yours as I'm convinced already that mw is going to help me heal quicker. I've joined the forum and will have a good read. The main issues I'm dealing with at the moment are- eating (it's difficult to open my mouth and get a spoon in there at the moment! I'm resorting to a lot of porridge) - I'm not sure whether to shower yet (haven't washed or showered for 3 days, bit worried it's going to hurt afterwards). Again, thanks for all the guidance. I'm going to print off a load of websites /blogs /forum posts and take them to my next dermatologist appointment being as she (all of the ones I've seen actually) obviously have absolutely no idea about ts addiction/poisoning /withdrawal /recovery!
    Best, Loretta

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    1. Hi Loretta, thanks for writing. Glad my blog is some help. I'm so sorry to hear the state you are in but know you will eventually get through this. I'm still having flares off & on. My hands will heal completely for a couple days and then it all starts over again for weeks. It's been this way for me for many months now.

      The very worst thing I ever did during tsw was to use moisturizers early on. Once I stopped and recovered from the MW, things went much better for me. Although it was still very difficult. But, I believe putting anything on the skin during this ultra sensitive skin period is the worst thing one can do. The second worst thing was using ts again a couple of times after being steroid free for about a year. It really messed with my system and has been very difficult to recover from. But, I feel I'll be done wihin a few months at the outside (I hope).

      As for showering, bathing, etc, I found that I had to experiment a lot to find what works best. I'm a huge fan of DSS, but found in late stages they tend to make my skin itch if I do a dss bath when my skin is mostly healed. They worked best for me when my skin was broken. I still do one on occasion but rarely. My current flare worsened by a great degree due to doing a dss bath at the wrong time. This has happened to me a few times now. At this late stage I'm much better off staying out of water for weeks at a time, and maybe doing a acv bath once every couple weeks. I still use tto most every day. It helps me a lot in getting those little open spots, and/or blisters to heal over.

      Anyway, I wanted to mention diet. I haven't changed my poor eating habits, but feel if I did or would, I would heal up nicely. My dietary habits are no doubt keeping me from getting over the hump to that final healing. Best of luck to you, Dan

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  10. Which are is harder to heal, as to the tops of the hands:
    Fingers & knuckles, or main part of hand (under knuckles and through to wrists)?

    My fingers and knuckles have been treated with ts and thru MW twice, with only 2 knuckles on my right hand being minimally dry/cracked/flaky/itchy at the end of the 30-day MW period (but, still, I did not use ts on them)( I have not used ts since 2011--though I may have used them inadvertently about 15 months ago, via a product purchased online that did not disclose its full list of ingredients).

    Right now, my hands are BOTH all-red, raw, sore, painful (like they are on fire). I putting them under the cold tap every 5 minutes. Continually since my scratchfest last night at 12:30 a.m. I have not slept. I can't take it!

    What should I do?

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  11. Dan, thanks so much for writing an informative blog that brings sanity and encouragement during my TSW roller coaster. I'm 60+ days in (2 weeks without moisturizers)

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  12. You are very welcome! Let me know if you need any clarification on anything I've written. Some is outdated and needs to be updated. Things always look different in retrospect! Hang in there. It gets better from here, especially if you refrain from putting anything on your skin. Best to you.

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  13. Hi there, I am very inspired by your story. I have been off topical steroids for 6 months now, having used them on and off for the last 15 years I would say (currently 31). I was not a heavy user, mainly OTC hydrocortisone, eumovate, and the occasional stronger steroid cream depending what my older brother had on his bedside table (long term eczema sufferer), and only really used the creams in some stubborn areas such as fingers and on my face. However the use on my face escalated over the years and, last year especially, I started to experience classic TSW symptoms whilst still on the creams, mainly hives, spreading rash, tightness, irritation etc, mainly around my mouth and lips. This is the area I have used the creams the most historically, plus eyelids and a small patch between my eyebrows. I finally reached the end of my tether in feb 2015 and went to see an allergist, who diagnosed steroid induced perioral dermatitis, and told me to come off the steroids and use a better skincare routine. I was convinced I was allergic to something, but he has tested me and aside from dustmites, pollen and dander, I am ok. He gave me antibacterial and antifungal cream, plus an emollient, Cetaphil, and put them on repeat prescription. The Creams helped initially ( I had bombarded the area around my mouth with so many different creams in the fortnight prior to the appointment that I think infection may have set in). However over time the cetaphil started to burn as my skin started to do the flare cycles of TSW; red and inflamed and sore and burning, itchy and oozy, dry and pink and flaky...repeat. There have been days of clear skin in between but the cycle will start again, maybe once or twice a month lasting for a couple of weeks. The skin is evidently damaged in these areas, with the rest of my skin being clear and strong. I have gone from a couple of days MW to Vaseline to makeup to dermol...all with little real joy as I struggle to make the area presentable for the day at work. I even went back to using the antifungal and bacterial creams for a few days last week and they didn't help at all, just felt cool for a while but no other benefits. Dermol even stings to put on the skin, so I know I am in flare mode. I think the best results I saw were with prolonged MW in that area a couple of months ago, however one morning the flaking was just so unbearable that I couldn't face work with it, and succumbed to moisturiser and probably some makeup. Last week I realised that using makeup mixed with Vaseline was actually making the rash worse, and the burning etc. As of yesterday I have decided to do MW again, as I think I am just confusing my skin. Today the area is extremely dry and a little crusty after a slight ooze yesterday. It is very uncomfortable and I have not been able to face work. It is getting increasingly tight as the day progresses. I do however think that commitment to MW may be the way forward as emollients, even Vaseline, really do seem to prolong the episodes, increase the redness and the itching. I am interested to hear more about what you did for the skin on your face. Do you have any tips for MW at all or how you dealt with the discomfort of this area? Sorry for the long email, I just want some stronger, more normal skin back.
    Thanks, Ella

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    1. Hi Ella, your allergist was right on with telling you to stop using ts. However, he/she did you no favors by telling you to use all that other garbage on your skin.

      I cleared the areas on my face within the first two months of my tsw by doing dss baths daily, sometimes every two days. I had used very little ts on my face but the areas I did use it on all broke out when I began tsw. I suspect the quick healing in those areas was due to me not using large amounts on my face for a long period of time, like I did on my hands. I maybe put ts on my face 50-100 times over a two year period at the very most, but very very tiny amounts.

      As far as tips on what I did in MW my blog has that info in many places. Too much to go into in one post here, but if you ask specific questions I can help better. The main way I dealt with the discomfort was using drugs like atarax, Valium, and weed, mostly for sleep, and to help me not scratch when sleeping. I kept myself stoned day and night. But, I that isn't much of a change since I was 16 years of age ha ha. The first two weeks of my MW was brutal and I had to use painkillers twice it was so bad. But after about two weeks things begin to get much much better. Doing dss baths and getting sun daily played a key role in that as well.

      I am not a licensed health care professional so can't advise you (isn't that lovely and very convenient for the medical est). I can tell you what I do and have done for myself. I learned via tons of research and common sense to put nothing on my skin other than air and sunshine, period. I take baths occasionally to clean my body. I avoid water on my skin like the plague, other than my baths. Feel free to ask for clarification on anything I've said or written on my blog as you go along your path to recovery. Stay strong you have a battle on your hands....er face.

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  14. Hi Dan,

    Thanks for the reply.
    Luckily I didn't use the TS constantly over the fifteen years on my face, just really on and off and very small amounts. But last year, when the TSW symptoms started whilst I was on TS, I kind of got abit carried away with them in desperation!
    Ok well I am encouraged by your success with MW, and I have committed myself now to doing this so day 1 down.
    I have no other aids though like the DSS, tea tree oil, ACV etc. What would you recommend from experience? Or do you think complete cold turkey from anything would be ok at this stage? (I think my skin has strengthened in the perioral area over the last 6 month TSW period regardless of the constant flares, so it isn't quite as sensitive as the beginning of the TSW period when my whole face burned for weeks!)
    Honestly it is so frustrating how much we place our faith in the medical profession. I know they are awesome for some things, but for things such as this they get it so wrong. I went privately to my allergist, and the creams he prescribed are ridiculously expensive; in hindsight I am convinced he gets a cut from the profits or something. I wish I could have a refund. yes I have been stupid to wear makeup during this period and not commit to either MW or non-MW, but it is pretty hard when what a renowned dr says to you is actually the opposite of what your body seems to require. That has been the reason for my confusion.
    Thanks Dan, I will persevere with the MW now an see what happens, I look forward to the next few days to see what happens. I have nothing to lose.....except a clown mouth!!!

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    1. I had THE top derm on the west coast tell me I have chronic eczema and would have to be on steroids for the rest of my life. I guess I proved him wrong. I have only used them a couple times in the last two years (stupid mistake) and my skin is now 99.9% healed from the damage the ts use caused. Has been for the better part of the last 12 months.
      This derm had bottles of hand sanitizer placed throughout his waiting room, and other rooms that had numerous chemicals that are KNOWN to cause skin barrier damage. That was my first sign I was wasting my time and money.
      Knowing what you have told me, and if it were me, I would do what I have done and continue to do, which has been quite successful for me. I don't put anything on my skin what-so-ever. If I didn't have dss, tto, acv, etc., I would just grin and bear it until all finally heals. It takes a long time but well worth it. Dss, acv, tto etc are merely aids to help in the healing process. One doesn't necessarily have to use them to heal. So, yes I would go cold turkey if I was you and stay with it no matter what.
      What will happen is you will experience lots of ups and downs. That is just part of the process of your body trying to heal and adjust to not having the ts. Eventually all heals. Good diet and healthy mindset are very helpful as well. The nice thing is, it gets better as each day passes. There will be setbacks, two steps forward and one step back, but don't get discouraged when those setbacks happen. My motto: stay the course.

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  15. Thanks Dan, well done for your successful recovery 'against the odds!' I too was told by the allergist that I would continue to suffer with perioral dermatitis my whole life and I must stay on the creams he has prescribed. Mentally that was tough to hear, so getting the hope back is actually the hardest part of all. However considering I see very few, if any, people walking around with a similar issue to me on their mouths, I was reluctant from the beginning to believe that this could not be cured somehow. Actually that was back in feb, so the steroids stopped on my face in feb, but I was actually prescribed some betnovate by my trusted GP in may for some eczema in a sensitive spot, which I have previously treated with TS years ago, so actually it is only since end of may I have been TS free. Damn it. I didn't associate the TS on an area diff to my face as being associated with any TSW setback....however reading your blog above, and knowing now so much more about the systemic affect of them, I now know that regardless of where you put them it is still a TS so that would have set me back to square one. Joy.
    Honestly keep doing what you are doing getting the word out about MW and TSW in general. I am doing my best with family and friends; I have a good friend who was prescribed TS for her 3 month old baby who had developed what is clearly some kind of milk allergy rash on her cheeks and arms....literally oozing, open sores. No allergy testing, no non-TS treatment, straight to TS prescription. Irresponsible is not the word. But those with little personal experience know no better, and so the problem perpetuates.
    Thanks for the rapid advice Dan. I will plough on with absolutely nothing on my face and brave the weird looks and stares, lol. I am confident for a full recovery, and a lot of money saved in the future on not buying the crap I have spent my life putting on my face. It is certainly an education going through this experience; evidently an education that was missing from the medical degree syllabus.

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    1. When I started tsw I broke out in several places I had never used ts, and even places I never had eczema as a kid. I believe that babies, as well as adults, break out from chemicals in things like baby oil, lotions, moisturizers, suntan lotions, etc. etc. on & on. And possibly even the chemicals in our food. Then, the dumb ass doctors give ts to "cure" the problem. Problem is, it was the chemicals used in lotions, powders. and you name it that caused the problem in the first place. It's beyond outrageous. These people are not trained properly on purpose imho. Think about it.

      Just look at what they put in various foods. And nobody ever asks "how did you get cancer"? They just blindly accept it as some kind of mysterious disease that one day we'll find a cure for. There is no cure. It has to be prevented. Trying to curer cancer is akin to trying to cure a cold. You don't cure colds, you build your immune system back up by eating correctly and the cold goes away. Amazing.

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  16. Furthermore, when I told the allergist that the initially prescribed emollient Cetaphil was burning my skin, he then confused that yes indeed Cetaphil does infact contain some ingrediants that make some people react badly, and I should try instead an alternative that is more gentle.....??!! I could have cried with frustration. The difference being that the first was more expensive than the second. Go figure!! Ok rant over.

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    1. What is amazing to me is these guys don't seem to be able to put 2 and 2 together. It takes me all of about 2 minutes to research ingredients (including inactive ingredients, which is a common place they hide ingredients like propylene glycol, which is in just about everything we consume it seems like. It is a waste byproduct of crude oil refining they used to pay to dump, but years ago they discovered they could sell it and put it in our food and skin care products) in stuff and find out exactly what is in it and how damaging things are. You would think a doctor could do the same.

      Juts look at the ingredients in everything you consume, including prescription drugs. They put propylene glycol in nearly all medications. It's truly mind boggling how uneducated the people of our country are. I better stop before I get hauled away.....

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  17. I completely agree that the huge epidemic of cancer especially is due to the environmental factors that we expose ourselves to. I studied cancer biology for my MSc and yes, don't get me wrong, cancer as a whole has an incredibly complicated physiology but yes, actually, our bodies are more than capable of dealing with mutated DNA....our bodies are doing it continually and are programmed to be successful at it. The fact that we bombard our bodies with such vast quantities of chemicals and synthetic ingrediants I fully believe just stretches the bodies protection capabilities. Like a security guard on watch, when faced with one or two guard dogs he can fight them off successfully. But if faced with a whole pack...one of them is gonna get a bite in. This experience with my skin, plus other general observations on my health and that of those around me, has encouraged me to start a course in nutritional therapy, and possibly herbal medicine. Even a 'healthy diet' these days doesn't exist unless you grow your own food or get from organic and trusted sources...our supermarket meats are pumped full of so many hormones it is scary. I still eat it on occasion, but one step at a time.
    Anyway yes I agree with your thinking, and my eyes have been opened. None of us are saints, certainly not me, and I am not criticising peoples life choices at all. But when we go to 'specialists' we do it specifically because we want to trust their education, their knowledge, their people centred approach. Sometimes we can, sometimes we cant. It is Russian roulette. Doctors can save your life yes. But they really do just treat the symptoms with most other conditions. Sometimes that is necessary. Other times it is really ignorance. A new, rounded approach is really needed. I better stop to.....climbing off the bandwagon.

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  18. You put it extremely well with your security guard analogy. That is exactly what happens. We all get cancer many times before we die and are not conscious of it. Our immune systems take care of it. I know I'm simplifying this, but 50 years ago cancer rates were 1 out of 100 people. Today it is something like 1 out of 3 people. What has changed in the last 50 years? I know because I was around 50 years ago and grew up in a different era. Still, we didn't have the kind of access to information like we do today. So, there is simply no excuse for the majority of people who choose to remain uneducated. Oh well, such is life I guess :)

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  19. Indeed. But yes something somewhere doesn't add up. We are getting more cancer and being treated with more drugs which feeds more money to the big pharmas who plough the money into making products containing all the chemicals under the sun to sell to the consumers who are getting more cancer.....idealistically simple but makes you think. Like they say, just because you cant see the walls, doesn't mean you are free.
    Anyway, keep on keeping on hey. I gotta get through my MW yet before I start setting the world to rights. Roll on clear, healthy skin!!

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    1. Do a blog. We all have to give back in order to receive. It was my way of taking my mind off tsw, and also getting the truth out in the face of adversity in the early days of my tsw. Blogging is the best way I know of in spreading truths in the face of so many lies. When enough people know things will change with great speed. The hundredth monkey theory...

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  20. I have been considering it with this TSW battle. No idea where to start but will look into it. You are right. One can only learn when the information is available. thanks Dan, and thanks for your positive words. It does help to know people have travelled the journey and are near to healing, if not healed. I will think about the blogging, and will let you know when I do.

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  21. Hi Dan,
    Just a in need of a bit of support! lol. So I am starting day 5 of MW (I know I have a long way to go but when it is predominantly round your mouth honestly every hour is like a lifetime!!). The skin is extremely dry obviously as are my lips, as I decided to just do MW everywhere including my lips damaged by years of lip gloss and Vaseline and no doubt badly placed TS!. It is very hard to eat and smile etc. Anyway I noticed yesterday that the redness had gone down slightly as the first lot of flakes started to fall off on their own on the skin around my mouth. I anticipated that they would be replaced my new flaes and dryness, and have woken up this morning with pretty much the same level of dryness and unsightly flakiness that I started with on the second day of MW.
    I am guessing that this is just a pattern that will continue until the skin has learnt to regulate the oils and the skin stops being so damaged? It is pretty hard not to pick the flakes and even my OH always seems shocked bless him by just how dry he area looks (is almost worse that the rest of my face except eyelids is perfectly fine healthy skin........I am undoubtedly grateful for that but the distinction is even weirder!!lol).
    I know I have to plough through, my question is that you say MW made you more comfortable.....I am guessing that is because the moisturiser increased redness, burning, oozing and stinging, which is exactly what I found. So MW stops this, but presumably the flip side is this constant and almost incessant flaking for a period?
    Thanks.....Im supposedly meant to be looking for a new job soon.......I think I will hold off on that until it stops looking like I have rubbed a sugary doughnut around my mouth!! Hope you are well.

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    1. Hi Ella, It's takes a couple weeks for the skin to settle down and adjust when you do MW. And it takes approx. 30 days for the skin to renew itself. MW made me more comfortable AFTER I completed it around 10-14 days. Those first 7-10 days were hell. Your skin will be dry and flaky for the remainder of your tsw recovery. However, the 2-3 years average it seems to take to recover from tsw, you should find that you can live with it as opposed to putting stuff on your skin that only irritates it more and makes the symptoms worse. I hope that helps and makes sense.

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  22. Hi Dan,

    Thanks for getting back to me. That does all make sense. My skin is a lot less red and inflamed and angry now I have started MW that is for sure, even after 5 days. Granted I cant move my mouth, but I will take that over how it was a week ago. I just wanted some reassurance that this CONSTANT flaking cycle is normal for MW...I am guessing they are just speeded up cycles which would normally have been interrupted by oozing and inflammation that was always caused by the moisturisers inhibiting this natural skin healing process?
    Ok I will stick it out......I think my actual lips are the most painful as opposed to the skin around them, I never realised how addicted they have become. This whole thing is just crazy, I cant believe how much this is all hidden from the general public I really cant, especially when TSW is so hugely detrimental to ones life for a period. Wow.
    Cheers Dan, you are a pillar!

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    1. You're welcome! The cracks that are giving you so much grief will heal up soon and all you will have left is dry flaky skin without the horrible cracking that is so painful. I often will use a tiny amount of tto on any persistent cracks AFTER I get to the later stages of MW.

      "I am guessing they are just speeded up cycles which would normally have been interrupted by oozing and inflammation that was always caused by the moisturisers inhibiting this natural skin healing process?" A resounding YES!

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  23. Thanks Dan, I have ordered some tto and acv and will use the tto yes when I feel it could do with something anti-bacterial. I haven't ordered the DDS as the rest of my body is perfectly fine. Will see how I go with the tto.
    Yeh I thought as much regarding the cycles as no sooner does some skin flake there is more flakey skin within hours, as opposed to days as I waited for a full flare to dry out when using moisturiser. If this is the case then bring on the flakes as I gotta get through these cycles regardless.
    Thanks again, hope you are still doing good.

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    1. I'm still having my two steps forward and one step back, but am nearly there. Lol, I've been saying that for over a year now. Things have pretty much been the same for me for the last 13-14 months now, but I can definitely see the end of the tunnel and it's very bright :) Right now, no skin breaks and no problems. That may change if I scratch in my sleep, which seems to be the hardest part of this when the histamine levels rise, especially at night.

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  24. Yes the evening is the worst and, I find, for some reason after a big meal especially my evening meal. Maybe that is because my issue is around the mouth/lips, but it is very uncomfortable. I find that sleeping with my window open and my somehow positioning myself so that my face is in an airflow helps (unless it is very warm and then I just rely on antihistamines!!). Saying that I sleep much better with this MW, as I was up nearly every night at 1am with relentless itching and inflammation when using Vaseline or dermol or whatever. MW is still in its uncomfortable stage for me but at least if I wake up I just accept the pain and roll over and go back to sleep; no wondering what to put on it to help and confusing the already angry skin even more!
    I have a question; I am a keen gym goer but made the mistake of coating my TSW areas in Vaseline before training prior to MW.....big mistake!!! Now I have started MW I have laid off the gym for the past week, one because I am unsightly but two because sweat really makes my bad areas itch and sting. I instead just do a walk a day for the vit D and the endorphins. Would you recommend laying off heavy exercise until the skin is stronger? Or maybe I should wash the skin in cold water after sweating to ease the itch and get rid of the sweat? I have so far in 5 days MW resisted the urge to wash my face, although I do dab around the lips with cold water after meals just to make sure there are no allergens remaining etc.

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    1. I can't advise anything without jeopardizing myself. I found that exercise is good for me. I learned to stop before the sweat starts coming out though. Soap hasn't touched my face but for a one week period at the end of year one when I thought I was healed. It caused my not completely healed skin barrier to break open again on my hands. I haven't had any tsw symptoms on my face since about month 2 or 3 but still don't wash it. Maybe once every week or so I'll wash it with a wash cloth and cold water but that's all I do. I may have become paranoid, but the pain I went through would cause anyone to become paranoid.

      I used dss baths quite often in my first year so I don't see water as a threat. I believe staying wet for prolonged periods of time is a threat to the skin while in tsw though. So, I just rinse my hands in cold water once or twice a day very quickly and dry them. Sometimes I don't even do that but once every couple days. It depends on whether I get something on them. I usually wear gloves if I'm going to handle dirty stuff so the hands stay clean. It's a tough question. I think exercise is very good for us and helps, but it depends on how bad the tsw symptoms are as to whether one wants to get all sweaty. I wouldn't do it because the sweat irritates my skin. But, if one can rinse off in a cool shower quickly afterwards, it may be very beneficial. You might want to experiment with it..

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  25. Thanks Dan. I think I will see these first couple of MW weeks out first and then see where I stand. I am so impatient that is the problem. I guess that certainly needs to change if I am going to stay sane! Yes maybe will avoid the sweat as wiping the area with cold water just causes the skin to promptly dry out in a major way. I will leave the body to do its own thing for now I guess.

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