i’ve got a question for you all

HELLO FISHIES,
i have a burning question that i really desire some input from your end,
because i need more data to confirm or overthrow my hypothesis and it would help me greatly if i can gather some responses from y’all.

several weeks prior to stopping topical steroids,
i got off a 12 days oral prednisolone (or prednisone) prescription.
my questions are:
1) did you use oral steroids within a month before TSW?
2) did your skin turn for the worst immediately within 2 months? worst as in the skin breaking out into “bloody wounds” and ooze 24/7.

please let me know!
consider this a mini research that isn’t as scientific as i wish.😛

40 thoughts on “i’ve got a question for you all

  1. 1) I didn’t use prednisolone within a month before TSW. Only used it once in my whole life.
    2) I was in an immediate flare literally on the 2nd day. Full nerve pains, red, oozing (no blood though!). Ironically the flare calmed down in the 9th week and I’ve been in the bloody/oozy spots since.

  2. Hey Juliana its been a long time since we spoke and I have come such a long way already 7 months into TSW. There are ups and downs but healing is certainly looking good overall.

    1) The only exception to taper steroids is for long-term oral steroids. Because if you are a long-term user, say 2 weeks or more it can potentially be fatal if you go into withdrawal after taking it for so long. If you are in the 12 day 25mg dosage range, I would consider it as nearing the long-term range but not yet there though I do believe that your body might have felt extremely shocked and weak at the start if you looked at the side-effects of stopping cold turkey. I did have multiple short burst of pred pills prior to TSW (usually 3 day 25mg courses from a GP, they wont give anything more).

    2) Worst within the next day. I was already in a “bad flare” because my pred pills ran out, and class 1 steroids were not even working any more after I have been slathering them all over like moisturizer like you did. So basically it was reddish but not open wounds yet, but it went downhill from day 1 to a bad state (The usual hell of TSW).

    Hope this helped! Jiayou for your mini research, no matter how small its still an initiative🙂

    • hello kenneth! thanks for your response! i actually didn’t stop oral steroids abruptly. and it has nothing to do with whatever question i’m trying to answer actually!

      i’d like to know in specific if you used any oral steroids within a month before topical steroid cessation.🙂

      and at which point did you start to have open wounds? did you experience a short bout of improvement after the first few months before dipping again into the TSW hell?

      • Oh I apologize must have misinterpreted your question🙂

        I did use oral steroids within a month before TSW is short burst (3 day courses from the GP) maybe twice? But I took much more “bursts” even prior to that.

        Open wounds within a week all red/rashy/oozing of stopping steroids. No short improvement at all. At day 1, it just went downhill.

        Hope this helps!

      • hahaha it’s okay kenneth. thanks for your reply once again!

        is a 3 days course even enough? feels like a half assed job at bringing the inflammation down, which in turn fed to the fire.

        thanks a lot for your reply! it helps!😀

      • Dont seem to be able to reply to your last message, but yes if you get pred pills from the local GP they wont give you more than a 3-day dosage. Their methodology is to have a “burst” dosage to quickly heal the inflammation and then stop abruptly so that the rash never comes back. But we all know that it does come back with a vengeance.

        Anything more than 3 days is usually from a derma, but the GP clinic location was convenient and initially it felt like a miracle drug and I doctor hopped just to get more to maintain the skin. Bad mistake, but that was in the past, and every passing day now is a step closer to healing🙂

  3. I promised myself I wouldn’t post on others blogs anymore but will make this one exception for reasons I’d rather not explain. I tried a 7 day course a week before giving up and going to my doctor and telling him I was done with ts for good and needed support to get through tsw. I knew the ts were no longer working so I thought maybe if I could clear most of the rash and then go back to trying the ts that possibly that would work. It didn’t. I did 30mg prednisone for two days, 20mg for two days, 10mg for two days, 5mg for two days, and then 2.5mg for the last two days. When I got down to 5mg the improved rash came back with a vengeance. It don’t work. Once you reduce the dosage it comes back. The only thing that does work is to not take any steroids whether they be oral or topical and suffer through tsw. However, there isn’t much suffering once you do MW successfully. At least compared to the kind of suffering we experience going through tsw while moisturizing.

    It’s not that the prednisone course made me worse, because it didn’t. It just doesn’t work as an alternative unless you stay on it forever and that will kill you eventually. If you were in your late 70’s I’d say yes, stay on oral steroids until you die. But not at my age and especially not at your age. I considered staying on them for the rest of my life but decided going through a year of hell would be the better route. If I had been older I would probbaly have stayed on them until I died.

    • hello dan! i’m so glad you decided to make an exception to leave comments😀 appreciate your response very much!

      i am trying to sieve out the answer from your reply, correct me if i’m wrong ok? based on your reply, at least 1 month prior to withdrawing from topical steroids completely, you consumed oral steroids for a week.. is that right?

      if i remember correctly, you’re about 7 months into TSW. i know you have withdrawn from moisturizer, but i doubt that will affect the severity of the withdrawals. i’m more interested in knowing whether or not did you plunge into the worst part of TSW immediately upon stopping topical steroids. please let me know!😀

      and don’t worry, i’m not thinking about going back on oral steroids. never ever. thanks for your advice though!

      • I stopped ts and immediately did a one week’s course of Prednisone. I saw decent improvement at first but before I tapered down all the way I started rebounding, and my skin continued to get worse than it ever had been within a week or so after that. I broke out in steroid induced eczema on parts of my body I had never used ts on. So yes, I most definitely plunged into the worst part of TSW immediately upon stopping topical steroids. It lasted until I did MW at the end of my month 2 at which time my skin started healing quickly. I doubt that if I hadn’t moisturized in the first month if it would have made much of a difference as to the heavy rebound effect. I think by the end of two months my skin was probably done with it’s initial rebound. Personally, I would be interested in knowing how people do by not moisturizing from the get go but I don’t know of anyone who has done that. And of course severity of each individual’s case varies so much so that alone makes it difficult to compare even if I did know someone who did tsw without moisturizing from the start.

      • I have a theory that going through tsw would be much easier by not moisturizing from the get go. I’m very curious about this because I was in a living hell for my first two months moisturizing, and when I stopped moisturizing my tsw went very smooth from that point forward with drastic improvement in my skin early on followed by steady improvement for months. I’m also very curious as to how moisturizing during flares effects people compared to not moisturizing during flares. I was wondering what you have learned from these and other Japanese bloggers who have done tsw without moisturizing at all in relation to these two things.

      • hey dan!

        i think you’ve also acknowledge in your previous comments that perhaps the first 2 months of sufferings is largely due to the severe rebound reaction from stopping topical steroids. and after you stopped moisturizing, perhaps it’s the natural course of the rebound dying down within that period of time. it’s hard to pin point the exact cause, even though event seems to intersect at the same time point.

        me too, i’m very curious as to the recovery between those who moisturize and those who didn’t. i suppose we will have a large enough sample size to observe in time to come!

        sadly, i can’t read japanese. i could only see from their photos and judge their healing from that.

        secondly, there are two groups of japanese bloggers. both groups quit moisturizers, one group healed relatively fast, while the other group took almost forever. the group that healed fast documented the entire process, and they healed up in a year or so. those who didn’t follow through seems to have spent 2-3 years recovering from TSW. some even had a second rebound years after withdrawing from TS.

        i tried to reason the difference between this two groups, since both stopped moisturizers. i figured the healing time will eventually depend upon the length of steroid usage, the potency, and the strength of steroid used. but that’s just my thinking, as i can’t find any other logical reasons that can explain for two different results when they followed the same method. there has got to be some other variables that were not addressed.

      • Hi Juliana,
        I don’t know. I think my initial rebound was fast and furious, and the flaring likely was over within the first few weeks. My hands were in extremely bad condition before I stopped steroids. So, when I did MW at the end of month two, it was probably a good time and I likely wasn’t flaring at that point. But, I also think if I had never had moisturized to begin with I would have had an easier time of it (comparatively), and also wouldn’t have had to endure the MW process. I’m starting to believe that MW shouldn’t be done while in the initial rebound or during a flare, but only before beginning tsw, or afterwards at a time when the initial rebound is calmed down.

        However, by about 5 weeks the skin barrier damage from using moisturizers continuously would make it all the more difficult to know when that initial rebound has calmed down. I remember towards the end of my first month my skin began to improve slightly but then just stayed the same and I could tell my Calendula salve had quit working on closing my open wounds like it was doing before. I researched every ingredient and found studies that showed the olive oil base was the culprit. So, I tried Shea butter and many other natural moisturizers but saw zero improvement. That led me to further researching and discovering that any moisturizing is highly irritating to the hypersensitive skin during tsw, and some studies that show that it also damages the skin barrier longer term, as in over a few weeks. I think when we are healthy and not going through tsw we just don’t notice the damage for years. Perhaps long term moisturizing leads to skin eruptions and more accessibility to atopic dermatitis. Which can then lead to a doctor prescribing ts for the skin eruption.

        In what ways were these two groups of Japanese bloggers separated? If one group had that much of a difference from the other group there must have been something that separated the two groups. What do you mean by two groups? If they did the same thing how are they considered two different groups? Is it just because they are two different groups on two different blogs? There has to be a difference in what the groups are doing. You said “the group that healed fast documented the entire process, and they healed up in a year or so. those who didn’t follow through seems to have spent 2-3 years recovering from TSW.” What did you mean by “those that didn’t follow through”? Follow through on what? Documenting their experience? Or, not moisturizing the entire way? Thanks!

      • hey dan!

        i’m sorry for the confusion! allow me to explain myself.

        when i say those two groups of japanese being separate group, i mean their outcome is different. one group seem to heal fast, while the other group took a long time to heal. and it just so happen that those who healed fast managed to show their complete healing journey, while those who took a long time to heal stopped blogging half way (and i couldn’t see how long they actually took to reach complete healing). i believe the difference is due to the duration of steroid use, but it’s something i can’t confirm or refute, so it remains as a possibility.

        “those who didn’t follow through” refers to those who didn’t continue documenting.

        the one lady whom i followed for quite a while was 2 years into TSW and MW, 2 years later she don’t look anywhere close to my skin. on the other hand, there’s a guy who made tremendous improvement a year into TSW and MW!!! the truth is, there aren’t a lot of bloggers out there who documented their entire recovery. for all i know.. there might be many more out there who have healed but did not show their later stages of healing. i just so happened see more of their photos when they’re at their worst, and not see anything about them after they healed.😦

        i’m hoping for you to heal sooner so that you can be the leading example when people search for the efficacy of moisture withdrawal in the future. i wish i stopped MW at the beginning so that by now, i’d have something to show everyone.. oh well! there’re a lot more things i wish i done when i was in the worst stages of TSW.

        i hope i’ve clarified your doubts!

      • Thanks for the clarification Juliana. It really doesn’t matter to me that much if it takes me 10 more years to be 100% healed as long as my recovery remains as comfortable as it has been since I did MW many months ago. This is what I’m trying to stress with people. Not that it will speed up recovery, which there is no doubt in my mind that it does. But the most important thing is the comfort factor during recovery. Obviously it won’t take me 10 years but you see my point.

      • you’re most welcome dan! i also feel that once the discomfort goes out of the question, the healing becomes more bearable, then the duration wouldn’t matter as much because at least we’re not suffering in pain every second. i am sure a lot of people have gotten your message to try out a method that may be more comfortable for them!

  4. Hi Juliana, I didn’t take prednisone in this current TSW but I did back in 2009 TSW (not knowing I was going through TSW tho). Think it was one or two months before TSW. It was VERY INTENSE TSW symptoms as you can see from my blog photos. This time round I was red but not as red as the 2009 rebound but I was also on detox pills then so that might have pushed TSW symptoms on a higher level? Dunno. But I hear that some do take prednisone for comfort going through TSW. It didn’t work for me cos I was rebounding every time I was on prednisone back then and I swear I will never go back on oral steroids. Each time I tapered off it (which is suppose to be safe) I rebounded! and I got a pig head swollen moon face!! I agree with Dan that any steroids: oral, injected or topical has rebound effects eventually. Mine comes immediately. Redness, swellling, and oozing was the biggest side effect for me back in 2009. It’s another quick fix that doesn’t deal with the core issue. I personally disagree to the idea of oral or injected steroids during or just before TSW for comfort. I think it will just make TSW journey worse and longer to heal.

    • hey ahfaye! nice to hear from you😀 thanks for your response!

      from what you wrote, you did take oral steroids right before stopping topical steroids, am i right?

      i don’t think it’s a good idea to maintain the skin with oral steroids/injections either. it’s not a long term solution that usually results in a worse state in the long run.

  5. I’ve been prescribed oral steroids, prednisone, for my super bad flares.

    Once in 09, I took them according to prescribed dosages and tapered down, my skin became flawless. There was no rebound flares upon tapering down the dosages. I managed to keep my lifestyle active after that (could be one reason of stopping the flares)

    In 10, I took them again for my bad flares. Flares died down during the course, but rebounded with greater severity, in places where I did not apply TS on (my back esp).

    I’ve also taken a couple of tablets of oral steroids, pred, in subsequent flares only to see horrible rebounds as I’ve predicted.

    Given that I don’t get good results from repeated trying, I decided to stop once and for all and went thru with my flares. Well, insanity is doing the same thing over and over again and expecting different results.

    Hope this info helps you in your course of research!

    • hey leslie! thanks for your reply!

      i conclude from your comment that you did consume oral steroids 1 month before stopping topical steroids?

      did your skin turn for the worst immediately?

      oral steroids worked for me many years ago, but that was the only time it was able to leave my skin pretty clear even after stopping it. i guess my skin wasn’t too addicted to topical steroids back then? haha!

      • I dont think I took them specifically 1 month before stopping TS. I stopped TS about 4+ months back, but over the past 2 years I’ve taken oral steroids on and off when my flares were super bad (whole body wide flares). I take them to calm the flares down temporarily, but after stopping the dosages the flares come back badly.

        I think TS/Oral steroids are okay in the short term, as prescribed by doctors. Thats probably why when I first took them, they worked beautifully without any bad effects. But 2nd time onwards, things got worse.

  6. I am going through a bad flare up on my face and i have some training which i have to teach in 3days. I was going to apply hydrocortisone in a few hours but after seeing these comments i reluctantly am not gonna do that. I know all the repercussions attached whatsoever and had made up my mind no more steroids but I am just at that point ( you know that point?maybe….)

    i know this post is totally not related; i just had to write this somewhere. sorry

    • sorry to hear about that seyi, i know it’s really tough to have to show your skin when it’s flaring.. but it is more worth the while to stay away from steroids at all cost even though it’s really painful. looking at it at a good way, you’re forcing yourself to be less conscious about the way you look, which may be a good thing! if people do question, you can take that as a chance to tell them more about TSW, which will educate more about this shitty condition!

      stay strong my friend.🙂

  7. Hey girl.
    1. I used prednisone for about a year straight and used it up the last month before tsw. I quit cold turkey and obviously didn’t die… haha thank God!
    2. My withdrawal seemed to happen within days (broken skin and burning red skin) but didn’t start oozing or getting really bad until about a month in. Month 2 was by far the worst for me symptom wise.

  8. OH yeah man.

    1) My eczema started flaring up (for a month and a half) after years of really good skin health. Now I know that TSW was just lurking in my life b/c I used steroids for years when I was 6-teenage years. It sucked and wasn’t stopping, so I followed a derm’s advice and took a one week course of prednisone.

    2) BOOM. On the day after the last 5mg pill was downed, I was in full on edema, red hot, eyes as slits, crusting over and yellow ooze the day after. I thought I had had an allergic reaction to prednisone for the longest time. Now I know better.

  9. Hi Juliana!
    I stopped TS and after 1 week was hospitalised and put on pred. My skin cleared up wonderfully and I’m now down to 10mg a day and my skin is flaring like crazy! I’m also on 200mg of ciclosporin a day which you would think woud help with the flaring bt no:/

    I’l let you know how i get on, im not fully off the pred yet so its hard to say

    thethickskin.blogspot.com is my blog im sure youll be able to keep up with me there! xx

  10. Hey! Just came off pred about a week ago and my nights have been hell. Ive felt like ive been on fire and itching like crazy. Waking up with a really red face and swollen eyelids. Finally did some googling and found out about tsa and tsw today. Ive been really down over the past few days but now im excited ive finally found whats been happening. Going cold turkey starting today! I. A bit scared of what’s going to happen though:/

    • brace yourself kev..! this ain’t an easy journey, but you’ll become a true man after all of it.😉

      i’m glad you’ve found the answer. i was so relieved when i realized what i had is NOT an incurable eczema, but a case of steroid addiction which can be dealt with. phew!

      you should be scared, but on the other hand, just make sure you become mentally prepared. knowing what will happen is daunting at first, but the faster you can wrap your mind around it the better. knowing what to expect is better than not knowing and be surprised in a bad way.. right?

      good luck and stay strong!

  11. Has anyone tried ungentum? Its not a topical steroid from what i have read online(or they pretty good covering it up). It helps me alot at least i believe it helps calms my flare ups on my face.

  12. I was not on oral steroids… I am 6 days in and a rash started and quickly spread across my chest and back and down my arms. It feels like a tight, dry, sunburn. It is so strange…

  13. I’m trying to get help with TSW. In early 2013, I got eczema on my right hand and my butt cheeks. I was 47 years old when I first started using them. I had never used steroids prior to this episode except for poison ivy as a kid.

    So in Jan/Feb of 2013 I went to my GP who said it was fungal. Tried fungal creams. Only got worse. Then went to a derm who said I might have an allergic reaction to the creams (sound familiar). Gave me TS. It helped and used it on and off for 1 year. Dec of 2013 it got really bad on my hands. I took oral steroids to get over the hump of a long dry winter. Got some relief and all was well. About 1 week after the oral steroids were gone (6 day pack) all hell broke loose. My butt cheeks turned red and scaly, then flaky…and itching was terrible. Started lathering on the topicals. I went back to the derm who prescribed more orals and new steroid cream (Dexamethasone). Lathered it on the area and it got better. Then, a week after the oral steroids were gone, I have it all over my body. Itching, burning red bumps on my hips, legs, arms, and neck. I finally found info on this and am on day two of no steroids. I’ve registered for the forums over at ITSAN and am awaiting approval. Can you provide any tips on how to get through this initial flare?

    Thanks
    Frank

    • hi frank,

      i’m sorry to hear about your situation😦 but congratulations on finding out the cause of your problems! your story is quite similar to a lot of other skin friend’s steroid usage history.. one steroid usually leads to another.

      the initial phase is the hardest as the eruption is really bad, and one is not used to such feelings in the skin. dr rapaport suggests using cold compress and ice packs to alleviate the burning! if it soothes you, you can stay in a tub of cool water, but do take note that these are only things to alleviate the symptoms, it doesn’t treat them. they will still require time to get better!

      i’m sorry but i can’t provide any more tips on alleviating the symptoms other than that.. i hope it helps though!

      take care and good luck! feel free to ask me more questions when the need arises!

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