FAQ

Perhaps you thought that “my story” was way too disorganized and too informative, I decided to just list the important things down, in a list.😛

When did I first use steroids?
when I was 2 years old (only used it several times and very sparingly), but I didn’t touch it for a long time until I was 14.

When did I stop using steroids?
11 april 2011.

How long did I use steroids for?
it’s a whopping 8 years (guestimation). could be 10 years, plus minus. for the first 3-4 years, steroids were used occasionally. towards the later years, steroids were used almost daily (because the rashes wont go away).

Where did I use steroids on?
initially I only apply them to the spots of rashes on my arm and hand. when the number of spots increased, I just slathered the steroids as if it’s my moisturizer all over my skin. that’s right (FML). I Was careful with my face though, I only applied on the spot above and below my lips. occasionally on my forehead.

What steroids and how much did i use?
1 tube of hydrocortisone, countless TUBS (100g each) of betamethasone valerate cream in 0.025%, 0.05%, and 0.1% over the past 8 years, minimal fluocinonide, one tube of elomet (mometasone furoate).

What symptoms did I get before I stop steroids?
worsening eczema that stopped responding to steroids, growing rapidly and spreading like wild fire. I tried many remedies and changed my diet but nothing helped. my nummular eczema made me look like I had a thousand mozzie bite all over my skin.

How long was my first flare?
it lasted about 4 months. my first flare consisted of my constantly shedding skin, getting edema, turning very red and feeling cold all the time. skin will seep a clear fluid if I scratch it (and I did). when my skin touch each other they will seep fluid too. I did enjoy a few weeks of fair and smooth skin before the next flare hit me.

How was the second flare?
the second flare seem to have brought about more shit than I could have ever known. I thought the first flare was bad, the second was even nastier. oozing has came to haunt me. I had an oozing face, shoulder, elbow, finger, knee, calf, and feet. that’s almost everywhere except my tummy and back. the ooze is different from what seeped through my skin in flare 1. and I called those the “bloody wound” because they take bloody long to heal (7-8 months for my case). skin is red and thick.

Are there improvements after so long?
yes there are! (thank god!) after those bloody wounds healed up, I thought I made quite a big improvement. skin on tummy and back are smoother than a baby’s ass. just waiting for the rest of my skin to get there too.

What did I use on my skin during TSW?
NO CLEANSER, water only. as for moisturizing, it was limited to vaseline petroleum jelly (face and body). from month 20 onwards i started using the simple moisturizing cream on my face. however, there were times when everything irritated my skin so i actually braved through my days without anything for some time. that felt like hell.

Did I go on any diets during TSW?
no i did not. i tried to keep to a clean diet that consists of unprocessed food, but i couldn’t stop myself from snacking on bread, biscuits and cakes. i quit all fast food and sugary drinks though! never a fan of them anyway.. but i just can’t stop eating those stuff made from flour. AND I LOVE BREAD. SO. MUCH. so i guess you can safely assume i wasn’t on an entirely healthy diet since i have way too much carbohydrates. you know what they say about a high carb diet? high carb = high sugar = inflammation. who knows, maybe if you go on a completely clean diet, you’ll heal much faster than me😉 but good luck on that because i’ve tried a candida diet at the beginning of my TSW and it has no apparent effect for me.

OK that’s all for now. Any suggestions or questions are welcomed, I’ll add them here later on🙂

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i believe people working for google must be really happy people,
because they get to see what people google for.
other than some ridiculous search terms (sexy legs wordpress, wtf???), there are a lot of questions that people have asked regarding TSA/TSW.
i shall sieve through the search terms and see if there are any questions that i can answer.

how long do topical steroid withdrawal last?

any time from 6 months – 24 months (just a rough estimate. it may take longer than 24 months). the duration depends a lot on the extent of skin damage, which is dependent upon

  1. strength of steroid used
  2. duration of steroid usage
  3. location of steroid use.

badly damaged skin will require more time to recover.

how to come off topical steroids?

1. do it like a man: cold turkey.
2. do it like a lady: tapering slowly. but this will still land you in the same state if you were to do it cold turkey anyway.

how to withdraw from topical steroids?

1. convince yourself that topical steroids are doing more harm than good

2. throw them all out

3. never apply topical steroids again during the course of recovery

4. brace yourself for the horrible withdrawal symptoms and wait for everything to be over. otherwise, you can keep visiting my blog to give yourself assurance, or seek emotional support from other skin friends through the itsan forum.

how to ease steroid cream withdrawal symptoms?

may i refer you to this entry.

how long is too long to use steroid on face?

that will depend on the strength of steroids. the key is to use topical steroids within a duration that do not allow for tachyphylaxis to occur. personally, i feel that once the steroid has lost its clinical efficacy (meaning you now require more doses to achieve the initial effects), it has been used for too long, because now you are setting yourself up for slippery slope of using more and more steroids. drugs are not without its side effects. a chemical with no therapeutic effects and a deadly side effect are known as poison. drugs are merely poison at a right dose that gives you more benefits than side effects, there’s a very fine line separating the two in the case of steroids, please be very careful.

how many people suffer from steroid withdrawal?

more so that you can imagine. those people who are trying very hard to keep their worsening eczema under control with the help of topical steroids which has lost their efficacy are also suffering steroid withdrawals, the only difference between us and them? they do not know that they’re having steroid withdrawals.

how to survive topical steroid withdrawal?

  1. lots of patience and assurance that you’ll heal
  2. support from family and friends
  3. manage the TSW symptoms as outlined here
  4. don’t stop believing
  5. a hell lot of perseverance and dermination

how did you know you were healing with red skin syndrome?

when the skin stopped looking red! lesser burning sensations, itch, dryness.

how much skin sheds during topical steroid withdrawal?

i am very interested to know the exact number as well. my estimate is about 15 – 20g of skin each day (since my entire body was red and shedding). multiply that by 365 = 5 – 7kg a year. just an estimate!

how to thicken steroid damaged skin?

  1. increase keratinocyte growth
  2. increase fibroblast growth and activity

how long does steroid rebound last

i think there is a slight distinction between steroid withdrawal and steroid rebound. steroid rebound pertains to the initial period of time when the skin worsens multifolds right after steroid cessation. my rough estimate for steroid rebound is about 2-6 months. after that, your skin will be taking time to recover from the damage it received from steroid usage, which will take any time from 6-24 months since the body’s natural healing takes that much time.

how do i know if i’m suffering from topical steroid withdrawals

just a small checklist.

  1. EITHER you have been applying topical steroids but they are not working for you anymore OR you have stopped using topical steroids for good
  2. rashes are spreading uncontrollably like wild fire
  3. you have tried every remedy that claims to alleviate eczema to no avail
  4. your skin starts to turn red all over
  5. general swelling/edema

how long will it take to withdraw from topical steroids?

in my opinion, just a split second. you just have to decide that you never want to use topical steroids ever again and there you have it, you have successfully withdrawn from steroids.

the entire withdrawal process will take much longer though, about 6-24 months (roughly).

– Juliana

141 thoughts on “FAQ

  1. I’m very interested in this. How soon did symptoms start after stopping the steroids? I have been on them for the past 12 years. I had eczema my entire life, and as a child, it actually looked like what your withdrawal symptoms look like even though I wasn’t on steroid creams back then!

    I pretty much only have eczema on my feet now, but I did end up having to use progressively stronger steroids on them. I decided to stop using them to see what happens, but I’m also scared, because I don’t want to look the way I did as a child. I’ve been off them 5 days now. But then I also realize I’ve gone on vacation and haven’t brought topical steroids with me, and nothing happened, so I don’t know!

    • hi there, my symptoms.. to be more specific, i started turning red after i tried to decrease steroid usage. a few days after i completely stopped using steroids, my skin started to turn red all over.

      while i was on steroids, the rashes never fail to spread to other places.:/

  2. What have you been using on your skin to promote healing? I’m going through steroid withdrawal only on my face and neck. I’ve been using pure refined emu oil and that has greatly helped speed up the healing process also I’m on a hypo allergenic diet so I’m very restricted to what I can eat. I m also on certain vitamins to help additional with internal healing.

    • I used nothing on my face to promote healing. I don’t know about you but nothing can speed up my healing. I just waited it out. towards the later part when my face was better, I applied simple moisturizer to moisturize it. but I don’t think it help promote healing.

      It’s entirely up to you to be on a restricted diet, but I find that it didn’t help me at all. I just avoided the general stuff like sugar and seafood after stopping my candida diet.

  3. Wow you are very brave! Nights are so hard for me I have alot of anxiety from sleeping because my face leaks plasma so that makes me toss and turn at night, which makes me not want to sleep because its incomfortable. Also have to sleep semi-upright because my face swells and leaks more if I lie down. My brother went through an agressive form of withdrawal much like yours and nothing ever helped him as well. He played the waiting game and it took him 6 months to heal just his face. Unfortunately for me this conditin crept up on me from no where it started 3 months ago from dry cold winter weather. I got dry skin and would scratch it and then that turned into eczema some how. I have yet to see a dermatologist and waiting to see her this thursday hopefully she can recomend something non steroid :S although im very doubtful my family dr has wanted to give me oral steroids and topical 1% hydrocortisone burnt me. Did you ever go on the prescription protopic before? I was mainly on that when I was younger. I really think you should try emu oil! Its a natural anti inflamatory and anti bacterial. Its a penetrating oil which contains omega 3, 6 and 9 and it penetrates the skin through 7 layers and works to thicken and heal the skin. Burn victims and people who go through tamautic skin situations use it and its remarkable. Read up on it if you have time. Thats basically the only thing that has given me relief and has stopped the spreading of eczema elsewhere. Thank you for sharing your story gives many hopeless people out there reason to persevere!

    • hi jamie, unforturnately, i think protopic will have its withdrawal effects too. i don’t know how things works, really.. the leaking part is really irritating, the best i can do is to try to sleep without rolling about.
      i never tried protopic, and i’m glad i didn’t. as if steroids isn’t bad enough..!
      i heard alot about emu oil, but i can’t get it over here in singapore. plus it must be pretty pricey. i tried coconut oil before, it also has said benefits but it didn’t really help me back then.. i also ate fish oils, which are supposed to be anti inflammatory, but they also didn’t help. *shrugs*
      thanks for sharing though.! i’m glad the emu oil has helped you. sadly this TSW process takes a long time.. i hope you feel better soon!

  4. Gee thats unfrtunate that you cant get emu oil! Anyway you look really well and are on the road to full recovery soon!!!! I went to the dermatologist finally yesterday and she recomended I stop all my natural therapies and go on betamethasone and antibiotics. I took the antibiotics in case I have an infection but i sure as hell won’t take the cortisone cream. I showed her my before and after pictures of my face before emu oil and after and she seems to think its worse!! Which i think is Wrong!!!! She saw me a total of 5 mins and thinks she knows more than what I’ve been through so far. I told her natural therapies have been working for me and she said to stop everything as it will spread to my bones? Needless to say she was a waste of my time and will not be going back to see her. I think its terrible that doctors don’t have the knowledge of root causes of diseases they only know to solve symptoms which is not helpful at all.

    • the doctors were educated to believe that eczema is incurable, and that steroids is the only way to manage it. can’t blame them! please do stay away from the derms for now, because there is just no way for them to believe us, afterall, they are the ones who been through 5 years of med school!

      stay strong!

  5. Did you find that if you left your house and were exposed to dry air the skin situaion would be worse? I guess singapore wouldn’t have that kind of weather but we do here in canada. going to work
    Is the worst and aggravates the situation.

    • well, I sat in front of the fan all day and it does dry my skin out. definitely I comfortable, but it will get better with time. kudos to you! you can still go to work like this? amazing! you’re really strong!

  6. Really had no choice but to go to work! I look terrible but it will get better every day is one step closer to full recovery. I do need help sleeping at night since thats the worse for me I may get some melatonin pills. I think the worse part of this is when you have the itch under control but then you cave and start to itch and it just never ends. I have people ask me all the time what is wrong with my skin and i just say what do you mean? Theres nothing wrong! I make them think they are seeing things haha I’m too tired of telling my story over and over again.

    • i also bought some melatonin pills to try, but i bought it at the lowest concentration available so it didn’t really work for me. i’m too scared of messing up my internal system!

      ha, i can’t stop scratching. scratching feels too good. it’s the only thing that kept me sane?

      that’s a pretty good approach to deal with questions about the skin. i should use it in the future when i get asked such questions! : ) i totally get you, i get sick of repeating my story to everyone, as a result i just distanced myself from alot of them. only the closer one stayed with me through the bad times. and the thing is, even if you manage to tell your story to some of them, they wouldn’t believe it and would actually question the credibility of the source of information.:/ i didn’t like that some of my friends didn’t believe me and kept asking me to see a derm. what do they know? NOTHING.

  7. Everyone at my job couldn’t believe what was happening to me and the funny thing is my coworker is on steroids for his eczema he won’t go off it! He’s too addicted. I feel bad for him because at some point hes going to go through withdrawal when his skin has had enough of it all. Hey do you have facebook? Add me if you do! (Jamie Fung) I have a picture of a white dog in my profile picture.

  8. Thank you so much for writing this blog! It is really helpful since like you said the dermatologists don’t believe anything you say. You made me feel like I wasn’t crazy, so thank you. I was wondering when you used only water to wash, was it really only water all the time? Did you find that was sufficient to get clean? Did you ever use makeup and if so how did you get it off with just water? Thanks in advance! I just really hope this all goes away…

    • you’re most welcome andrea🙂 i aim to provide help and hope to fellow skin friends, thank you for letting me know that it has reached its goal!

      when i used water to wash, i really just used water only. all the time.
      i felt that it was sufficient for me, i don’t have that much dirt on my skin anyway. i figured since i have so much skin fall.. all that dirt would have fallen off together with my skin anyway. haha!
      i did not use make up when for my first 23 months. if i did, i would have to use a makeup remover which might have irritated my skin. there is no way you can get make up off with just water, maybe you can try using olive oil to gently massage your face until all the makeup comes off. not the best makeup remover but at least it’s gentle and natural.

      good luck..!

  9. Hi Juliana,
    Im an eczema sufferer, but I’ve never used steroids. My question is, since I see so many people being cured after their TSW, will I too? I’m 15 and a half, and I’m scared that it will never go away. I’m hoping that you might have an answer for me🙂 Thanks

    • hello daniel,

      you do understand that what we are going through is the steroid withdrawal instead of eczema flares, right? since what you’re having is eczema, there are things that can try to find out what is causing your eczema. for us, it was the steroids that led to the worsening skin inflammation. you need to find your own cause that led to your eczema, once you get rid of it, it’ll go away.😉 you know what, just go and get your blood tested, request for an ELISA allergen test. i feel that that is better than the skin prick test. find out what you’re allergic to and stay away from it.

      good luck!

  10. Hi, I’ve had eczema since I was young. I currently am suffering eczema mainly on my face. No severe scabs or anything bloody. In fact, it’s not that severe, just my whole face is red (pink). It’s smooth but I can tell it’s very thin. What do you think I should do if I want to get rid of this redness or reduce it? What moisturizer, IYO, should I use? Cuz I currently am using Shea butter but it’s hit and miss generally.. Thanks! (You look great btw. Very inspiring to see the progress. Gives me a lot of hope!) :’)

    • thanks rich😉 hmm i don’t know much about your history. have you used steroids before? i need to know what is causing your face to be pink.

      i don’t know what can get rid of the redness, but if your skin is actually okay, you can even out the skin tone with a greenish primer, or a light coverage foundation just to hide a bit of the redness.

      as for moisturizer, it really depends on yourself. have you tried either cetaphil, or physiogel..? they claim to be dermatologically tested and approved for sensitive skin..!

      sorry if my reply is a bit redundant, i really need to know more about your skin profile before i can tell you anything. i don’t even know if you are prone to have oily skin (like you have oil plus/acne), or dry skin (skin feels tight after washing with water). if you have oily skin it might be better to use a water based cream, while you can use a oil based cream for dry parts.

      hope it helps!

      • lol hey sorry yea I was kinda vague but im only gonna talk about my face😛.

        So my facial skin was not affected by eczema whatsoever up until 2007 (I was 20). One summer I went out all the time and started to sweat intensely on my face everytime I came home. Normally I would ignore it but for some reason, I felt like I had to rub and scratch to add a bit of comfort to my sweating face. After I come home from the beach or a long day out under the sun, I would rush to the bathroom and scrub my face with a cold wet face cloth. At first I was gentle. But after a few weeks went by, I began noticing my cheeks becoming more and more red. I ignored it since I thought it would heal anyway. But when the summer was over, the redness on my cheeks stayed, as if it has permanently damaged my facial cheeks. I had gotten to the point where I had scrubbed way too hard😦 ..The skin on my cheeks began to become chapped and really dry. So until today, my facial eczema has become worse and worse. The redness began spreading and other parts of my face began to itch more. Around my eyes, above and below my mouth, forehead. You name it. Essentially my whole face is “red”. Well, Not so much if you look at me from 15 feet away. But up-close,… yea, I pretty much look like I had a few beers in me.😦 But yea, I’ve used steroids on my face before for a period of time but it burned like crazy and it didn’t help. I think it was protopic. I have not used steroids for well over 2 years now. So the things I use regularly are shea butter, st. ives (which never irritates me), and sometimes keri lotion. All have helped moisturize my skin for a good while but the redness, the overall pinkness of my skin tone is always there. I can’t even remember the last time I had healthy yellow/pale skin (Im chinese)

        My facial skin IS dry if I don’t moisturize it but it’s not too bad where skin is falling apart and peeling off. My whole face is basically pink (light pink on a lucky day) and when I touch it, it has an unusually smooth texture mixed in with some dryness here and there. It’s also very thin and “naked”, if that makes sense.

        So there you have it. My brief history and info in a nutshell. The reason I don’t talk about my body eczema is because it’s very mild. A few small scabs here and there, but overall I’m okay on my body.

        Hope that sheds a bit of light on my past😛. My question to you is: Which products did you use on your face during this amazing healing process?

      • ahh i see, i’m gonna assume you didn’t use steroids on your body at all? because the possible outcome will be very different. if you didn’t use, then you most definitely do not have TSW, that means your pink face is probably brought out about over stimulating the skin and over exfoliation. you might have traumatized the blood vessels there since the facial skin is much thinner.. but i believe with time and the right soothing products, it’ll be good again. i hope you already stop scrubbing your face that hard. it’s actually advisable to do a gentle scrub once every month since the skin takes 1 month to surface from the dermis all the way to the epidermis layer.

        however, if you did use steroids on your body for long period of time before, then there are chances of you having mild case of TSW.. nothing time won’t heal.

        i didn’t use anything of my face for the most part of the process because it was oozing most of the time. however when it did get better, i relied alot on the simple kind to skin moisturizer. you can refer to my skin care post some where below..! i did mention about the things i used during TSW..!

  11. Hmm.. Yea I did have a mild case of TSW, very mild. But it was all in all mild.
    😛 Reading your blog and seeing you overcome so much is very inspiring. I’ve experienced quite a bit of dark moments when I didn’t wanna do anything or go anywhere. Right now, Im hoping for my face to clear up, or at least improve. It’s really taken a toll on my self-esteem. Thank you for sharing your story, beautiful😉

    -Richie

    • Rich, I’m going through the same thing you are with my face. If I don’t put anything on it, it’s dry, scaly & itchy. If I do put something on it like jojoba oil or fragrance free Eucerin or CeraVe or even Vaseline it’ll turn bright red & burn & I’m in the end of my 4th month of TSW. I think it has to do with the TSW. I don’t know what else would be. I’ve never had this problem before until I stopped topical steroids which was in February.

  12. Hi Juliana, first of all thank you very much for sharing your experience with us, reading your story is helping me a lot lately.🙂 I had been using Flubason (0,25%) on my face for 3 years, and I stopped using it just one month ago. The first 2-3 weeks were HELL, it seemed like someone threw acid on my face! Now I feel better but I’m afraid it’s just the beginning of a very long journey. My face still looks a bit awful, even because I’m experiencing a terrible side effect of topical steroids: hairiness on my cheeks😦 . I wanted to ask you if you had this problem too, and just in case how did you deal with it🙂
    (Sorry if my english is not that good, I’m italian🙂 )

    • hello Sara! your English is mighty fine!😉 I can understand everything that you wrote!

      the first few weeks are usually the hardest..! don’t be discouraged! it will be over.

      I do not have hairiness issues on my cheeks since I didn’t apply the steroids on my cheeks, however I do notice abnormally long hair growth on my other parts of my body. I have always wondered if it’s due to steroids..! now that you mention, it could be!

      from what I observe so far, the hairs are getting finer as time goes by. I have yet to see them go away completely though. I’ll keep observing and let you know😉

      stay strong and good luck!
      xoxo

  13. Hi All,
    i was using betnovate n from the past 10 years. Now weaning off steroid slowly. My face is burning red like hell.How long till this burning takes.am i going to be fine or not. pls guide m in terrible shape.

  14. Hi Jul, I’m glad I chanced upon your blog. My 6 year old is currently going through TSW. It just pain me to see her suffer like that and yet as a mother I’m so helpless. The only encouragement I give to her everyday is that she is brave girl and she will be healed soon. Her flare up is so bad that when she goes out, people stares at her like she is one infectious human and I keep telling myself to ignore them for their ignorance but sometimes I just want to tell them off right at their face. I’ve not have a good night sleep for a long time time, every night Ash will wake up and scratch and cry. Sometimes I will feel so sick at myself for yelling at her and she apologizing to me that she woke me up, just breaks my heart. So many docs so many different school of thoughts….I’ve lost count. I’m heading for a holistic cure and tcm. You know,these few weeks I’m so tempted to put her back on steroids seeing her suffer like that but I know there will be no end. Your experience gives me a hope…a light at the end of the tunnel for Ash.

    • hi karpatee, i’m sorry to hear about your baby girl’s sufferings..! good thing is that she’ll heal eventually. i know it sucks for kids to go through this torture😦

      perhaps you’d like to visit kline’s blog where his mother loren keeps track of his healing?

      klinestopicalsteroidhell.blogspot.com/‎

      good luck and stay strong! it’s not easy on her, it’s even harder for you to see her suffer. *hugs*

  15. Hi Jul, I’m so lost right now. Ash has been complaining she is in pain. She’s itchy all over and in pain. She’s currently on TCM. Improvement is very very slow. She has the hot and cold sympton, can’t sleep, shedding, super dry skin. I know if I bring her to a derma she will be given steroids again. I feel like a bad mom seeing her suffer like that…

    • hey karpatee, I can only imagine how bad you feel right now. I’m sorry to hear that.. but you have to stay strong for her! you are NOT a bad mother, because if you were you would have taken the easy way out and slathered more steroids on to her! progress IS slow, but she will get there. remember, just like success, the longer it takes to come by, the longer those results stays!

      xoxo

  16. Your blog has been a crucial source of hope during my TSW—thank you for sharing your story! I hope you don’t mind my asking a rather personal question (it’s just that I haven’t been able to find any testimonies elsewhere on the Internet)—

    Did you get regular periods during your TSW? Mine are very irregular. I’m currently 10 months into my TSW and I’ve only had three periods during the entire process.

    Thanks in advance, and wishing you happy holidays! X

    • hello sooji!

      you are most welcome, thank you letting me know how my blog has helped you! ^^ and don’t worry, i don’t mind you asking me personal questions at all, since i’m just a stranger in the www.😀

      i did get regular periods during my TSW, but they were a little off the usual cycles. especially for the first 3 months, my period came every 6 weeks instead of 4 weeks.

      all in all, i think it’s not a call for concern right now, since the withdrawal messes up our body’s hormones. i assume you find the lack of period off because you usually have a regular period before TSW? my advice is to keep an eye on it for now and keep observing until you are more or less done with TSW. if the period problem still exist by then, you can always visit a gynae and get it checked! as long as there are no pain or discomfort right now, it should be fine!
      😉 happy holidays to you too!

  17. Hey girl. To add to the comment about the menstrual cycle getting all weird. Lol. Let me tell you. I tried for over a year to get pregnant with my husband. Nothing. I was on steroids the whole time. Went off steroids in august. My periods became abnormal. I got them every three weeks it seemed like. I wasn’t even sure I was fully cycling well. Then boom October as I am goin thru the worst part of tsw for me. Bed ridden. Screaming. On major pain meds. I find out im pregnant. Holy crappy! So now im 7 months in withdrawl. 5 months pregnant. It has been horrible. A blessing to be pregnant but timing is horrible. So expect your hormones to be weird but in my opinion it was the steroids that made you weird and now your body is starting to respond normal . Btw Juliana I love your posts. They keep me going!

    • hello michelle! thanks for your comment!

      congratulations on being pregnant! i know it’s a very joyous moment, but like you said, it’s really a very bad timing.😦 i can’t fathom how to go through TSW with a life inside me. god bless you!!!

      and you might be right, i have thought that perhaps the present me is the normal me, whereas the me in the past was messed up by the steroids. only time can tell!

      thank you for liking my posts😀 i’m very happy whenever people tell me i am able to encourage them!

      xoxo
      take care and good luck!

  18. Hi Juliana,
    Thank you so, so much for sharing your story and pictures–“sugar-crusted” face and all.🙂 I found your site during the wee morning hours in October 2013 as I was desperately looking for eczema pictures that looked like my 10 year old son. I’ve never found any eczema pics that matched him, but your pictures (especially the facial pics) did, and your story led me to ITSAN. Today is his 160th day off TS. YAY! I really like how you’ve set up your blog so it’s easy to find information. (How do you put the black rectangles over your eyes and add the circles and “written” comments on your pictures? I just started a blog for my son and wondered if there’s an easy way to do it.) Anyway, MANY, MANY THANKS again for helping the red skinners! God bless you, and keep on healing! RAC http://www.beyondtheitch.wordpress.com

    • hi there rac! thank you so much for the heads up! i’m glad you have chanced upon my blog during your search, and congratulations on the 160th day! it’s almost half a year already!

      i added the rectangle shades (hahahahha i think they sound more glam that way~) and comments using photoshop. of course you can use other image editing softwares, i’m sure there are some softwares that are easier to use for the sole purpose of adding things onto the image, but i don’t use them so i don’t know. perhaps, you can try some iphone or ipad photography apps!

      lastly, you are most welcome😀 always puts a smile on my face knowing that someone has benefited from my blog. god bles you too!

      xoxo

  19. Juliana- Hi, thanks for such a great site. I had a really negligent derm give me a cream she compounded that contained Betaderm 0.05%. She only told me of the Retin-A and hydroquinone content of the cream (no insert as she made it). She told me to use it for 90 days on my jawline for melasma (I also used it a bit onto my cheek, on a spot on my left forehead and on my chest). My face burns now (twelve months + being off it) and my skin is atrophied with some stretchmarks. My skin no longer heals properly and has lost a lot of elasticity thickness. It seems to have affected the skin outside of the area of application. Have you found that? Do you think it permanently damages fibroblasts everywhere? This has really impacted my life.😦

    • hello, i really like your username, CUTECHICK!!!😀

      i just went to google what’s betaderm, betamethasone in 0.05% concentration.. that is half strength, if i remember correctly. considering you only used it for 3 months, i would say if there are any damage to the fibroblast, it wouldn’t be permanent because betamethasone isn’t the strongest steroid out there. plus you didn’t use it under occlusion, that further reduces the amount of steroids that can possibly reach your dermal layers.

      ok, what i’m saying is, i am sure the loss of elasticity will only stay during TSW. once you’re healing from TSW, your skin will go back to normal.😉 for your case, i highly doubt it’ll permanently damage the fibroblast EVERYWHERE, considering you only used it on your jawline. maybe it’ll reduce the fibroblast proliferation rate on your jawline (and skin near there), but definitely not everywhere.

      and yes, the withdrawals seem to affect areas that are out of the regions where i applied steroids on (but then again, i applied it to a very wide area).

      everything will be over in time to come, have faith, you’ll be a cute chick again soon!

      xoxo

    • which parts of your skin? if it’s parts that gets stretched often like your arms, back, and waist area, i would say it might not necessarily be due to topical steroids! because my brother who have not used topical steroids have stretch marks on his arm/shoulder area. no idea how he got that!

    • hmm, let’s not jump to conclusion too soon okay?😉 it might be just temporary! you have no idea how resilient our body is and how well it can recover😀

      have hope!!

      xoxo

  20. Unfortunately, it was several doctors who pointed them out. I had no idea what had happened to my skin. My face has been reddish with flares since getting off the cream over a year ago. I have no oozing…..could it be just withdrawal still or rosacea? I am so glad you are better! Hugs.🙂

  21. Hi Juliana, thanks for all your valuable information. For FAQ, lots of discussions in ITSAN on sun or sweat. Did sun light or sweat (from exercises) help you during the withdrawal? Thanks!

    • you’re most welcome!🙂 glad to be of help.

      i can’t tell whether sunlight or sweat helped me during withdrawals. didn’t do it consistently enough to see any differences. perspiration irritated my skin so i don’t think it actually helped immediately.

  22. Hi,
    I have been using hydrocortisone 1% on my face for 3 months straight and I didn’t know i was supposed to use it for a short period. So I stopped 2 days ago and my face is just so bad…
    How long do you think it would take for my skin to heal? This is just so depressing…

    What can I do to calm down the red and itchiness? I currently use coconut oil on my face 3 times a day. Do you think thats okay? Please help someone!

    • hi diana! sorry to hear about your plight! but you’re lucky because you only used steroids for 3 months, and hydrocortisone is the weakest steroid. i guess you’ll heal up in no time!

      in the mean time, if you want to calm the red and itchiness you can consider using cold compresses like ice. if coconut oil doesn’t irritate your skin, you can continue using it as you wish.

      • Aww thanks so much for those words of encouragement. I’ve been so depressed these past few days and you made me feel better :’) I hope your doing well as we all do not deserve this!

        I’ve been reading online that during tsw it is best to leave the face alone because it is super sensitive and that moisturizing slows down the process of healing since its irritating the skin. Do you know if that is true?
        If it’s true, should I not put lotion on my face even though it is super dry? :0

        Thanks once again!! Xoxo

  23. You are the reason I stated in tws in the first place. It’s been over a year and a half. I just want to know when does the itching stop? I’m constantly itchy, day and night. I’ve been house bound for a month now, I’ve been suicidal. My skin feels worse than it was before i started this, I lost everything that’s important to me. I don’t sleep and I rely on sleeping pills, I haven’t left my room in days. I just want hope that the itching will stop… Please give me hope

    • hello there, the itching will stop! mine only stopped around the 20+ months. i won’t lie, sometimes i still itch a little, but it gets better with time. it used to be so bad, i just can’t keep my hands off myself 24/7.

      have faith my friend! the skin will get a lot worse than before you started because you still had steroids to keep things rosy. now it’s “all hell break lose”, but it’s necessary for your skin to recover and regenerate.

      and being home bound isn’t all that bad right? i’ve been home bound for an entire year, now that i look back it was kinda relaxing to just stay home day in day out, living off dramas and food..

      everybody have been suicidal, it’s part of the process. and i can tell you you’re stronger than what you think. you will gain everything that you lost right now in time to come.

      so, hang on tight, ok?

  24. Hi Juliana, thank you so much for sharing your experiences. Your blog has been a Godsend ever since my normal eczema started becoming ‘incurable’ with steroids last year. You’ve given me so much hope and I can’t wait to be healed like you!
    I was just wondering though, do you think it is common for TSW to only affect the areas I applied topical steroids to? I applied mometasone furoate on my face daily for two years straight since the eczema on the rest of my body was still manageable, and now I only seem to be experiencing extreme withdrawal symptoms on my face😦 it’s especially hard since I’m in my last year of high school and finals exams are coming up in November. I probably won’t be healed by then, but in my country I’m only allowed to apply for special considerations under serious health circumstances, and apparently refusing to use steroids isn’t one.
    Thanks again for being a brilliant ray of hope and such an inspiration! God Bless you!

    • hellooooo huey! you’re most welcome😉 be patient girl! in the mean time, keep your positive energy up🙂

      i think it’s absolutely logical for skin that has been in direct contact with steroids to flare up worse. it may or may not “only” affect those areas. in the beginning of withdrawals, it is more of a systemic reaction so the entire body is usually affected. however, as time goes by the withdrawals symptoms are localized to skin that is damaged by steroids, by then you’ll realize the symptoms are only occuring on spots that have been exposed to steroids.
      😦 i’m sorry to hear about you not being able to apply for medical leave. is it ok if you wear a mask to school if that makes you feel better? just a normal surgical mask.

      i know how hard it can be when the rashes are on the face.😦 i wish you all the best!

  25. Hi, I’ve been applying betamethasone valerate 0.1% cream daily to certain areas on my face for probably about a year or so.. I recently stopped using it because I noticed it was not effective anymore.. about 2 days after discontinuing use my face started breaking out in a red rash, it wasn’t itchy or painful just very unsightly.. now 4 days later my rash has spread over my face everywhere except my forehead (because I did not apply the cream there) and is very itchy and oozing a little bit.. I have not been applying the cream anywhere else (except for my hand a few years ago).. will the rash spread to other parts of my body? and since I did not use the cream for very long do you think my healing process will be quicker? I’m trying not to stress but it is very hard not knowing what to expect!!

    • hello little birdy! the tough thing about TSW is exactly what you mentioned: not knowing what to expect (especially when it comes to healing time). so it sort of taught me to live in the present😛

      regarding your question, it may or may not spread to your body. that i can’t tell for sure. but even if they do, considering you never used steroids on your body, the rashes will die down very quickly. i’m more concerned about your face because betamethasone is a pretty strong steroid for the face. and i do think your healing process will be quicker, since the extent of skin damage is directly related to the length of steroid usage.

      hang on tight! it’ll be useful if you can prepare yourself for the worse!

  26. Hello Juliana,

    Just curious, when did you realise that you can finally put on make up? I’m about 6 months into TSW and right now, its mostly affecting my body. I do get dry patches on my face but haven’t had swollen eyes since the first week of TSW. About a few weeks back when my face was soft and smooth (except some elephant skin which I can tell when I smile or make a face), I put on a bit of mascara and my eyes ballooned up! Quite sad as I thought there shouldn’t be a problem since the mascara is on my eye lashes.

    PS: Thanks to your blog, I made the decision to stop all steroids.🙂

    • hello penny!

      i think i started applying some makeup around month 21 or 22. my skin was still sensitive so i couldn’t wear foundation, but i could play around with my eyeliner. i think it’s best to try to avoid any irritation on your skin during this period of time! don’t be sad! you have a whole life to wear makeup after you’ve healed!

      i’m glad you found the courage to stop using steroids🙂 stay strong and good luck!

      xoxo

  27. Hi. I am 49 years old and has been on anti histamines for years. The last three years my doctor had started me on steroid injections and creams.He even increased the oral steroids from one tablets to four tablets this year. However, I did not take that much as he prescribed. At the moment I simply stopped all medication and is looking pretty ugly. But the itching has lessen.I am taking traditional chinese medication to cushion the pain I am going through. My arms, chest and face are all red. But recovery is slow but seems promising. My upper arms are slowly turning back into normal colours. But how long does it take my face to recover? I have been putting them for years and now my eyelids are actually swollen and watering most of the time. I have just started cold turkey 3 weeks back. When I went back to see my doctor, she prescribes 4 tablets of steroids per day and cream for the face as well. Your blog gives me the inspiration to stop. But I really need to go back to work. How long does it take for my face look presentable to go back to work? Kiindly advice. Thank you.

    • hey lorna, i believe i’ve replied your email already? i’m not too sure about the face, because healing time varies from people to people. i took about 2 years before my face looked quite normal, but red rashy parts were still visible.

      i’m sorry you have to work in such a condition. i wish you all the best.

      • Hi Juliana. Thanks so much for the inspiration and support. I have gone back. I am now totally off steroids and anti histamines. I still have small patches of eczema but they are manageable and not really noticeable. My face is now totally clear. I have already gone back to working full time since March 2015. Even in terms of food wise, there is no more allergy. The sun no longer makes me breaks out in rashes. My Chinese sinseh has already taken me off the tcm. He said I have detox successfully after 1 year of tcm. Here I would like say thanks and you are such a gem.

      • i’m so glad your skin is doing fine now! give yourself a pat on your shoulder for sticking it out and getting through this tough phase. i hope your skin continues to stay clear!

  28. Dear Juliana,

    Glad that I chanced upon your post via Itsan.org as it has given me lots of advise on how to handle TSW.
    I have a few questions to ask :

    1. Do u get big bumps ( especially on stubborn areas where we apply the most steroids?)
    2. Does that area have yellowish dried up skin? And it is itcher than other areas?
    3. My TSW seems to be recovering quite fast since I watched my diet. Do u think TSW can recover earlier than 6 months)

    Thank you in advance.
    Iris

    • hey iris, glad you found use in my words!

      1. i do have big bumps, actually they are lymph nodes. not particularly on areas i applied the most steroids though.
      2. yes it has yellowish dried up skin. my entire body was itchy, so i can’t answer your second question.
      3. i think TSW can recover within 6 months if you only used a very mild steroid on a very small area on your body.

  29. Hi again,

    My foot is currently reddish but does not feel hot unless there is a flare. There are lymph nodes swollen ( normally on those area where I applied lots of dermovate).
    1. The lymph nodes seems to be the itchiest part n when it flares now, it is itchy n swollen, then the yellowish water seeps out. How can I handle this?

    2. Almost my whole foot is red after staying in the hospital for a week. Now almost 1 month into tsw, only partial itch. But my foot still has this problem : whenever I press it’ it becomes whitish – like blood going away. But later it becomes reddish again. Why does my skin become reddish? but it does not burn though. Is this also tsw?

    • 1. try your best to air dry it. the fluids will seep out anyway. you can use ice to numb your skin to reduce the itch.

      2. your skin become reddish because the blood vessels have dilated uncontrollably. and yes, this is one of the TSW symptoms.

      • Hi Juliana,

        Thanks for your reply. Guess I was happy too soon when my left foot seemed “silent” . Only my right foot had the lymph nodes “flaring” and “oozing”. I am still going to work coz I can’t take leave unless there is a valid reason. Just wanna know how can I “dry up” the oozing areas before I go to work each day. Can I use the potassium solution ( Permasol) to help with drying up and treating the problem area? Is it necessarry to use moisturiser on the areas with TSW?

        Glad you have had strong family support. It is really not easy with two young boys at home. Really feel like taking “leave” from them. But I draw strength from reading your blogs and counting down…. by the way, is dermovate considered a strong steriod?

      • hi iris,

        you can try domeboro solution, dr rap recommends it. i’m not sure whether potassium solution will work, i haven’t tried that out before. it’s not necessary to use moisturizer unless you feel very uncomfortable, to a point where you can’t move your limbs.

        dermovate is the strongest steroid out there, it contains clobetasol. it depends on whether you used cream or ointments. ointments are even more potent. i have not tried alternative therapy like bioresonance, i highly recommend you not to waste money.

        i did not apply anything to my oozing area.

  30. Hi Juliana,

    Thank you for your prompt reply!

    Oh dear, I used the cream version and my derma changed it to the ointment when the area got drier…. Going to throw away my dermovate now! So now I understand why my foot is going thru such a bad TSW after I got Bufencon jabs ( about 2 times a year since 2012) plus the dermovate ointment.

    After I saw the went for the alternative therapy, using the Bioresonance Therapy to do a food intolerance test, I was advised not to take dairy, wheat/gluten. From my blood test at the Derma, I was tested to be allergic to eggs and leek ( level 4 under the immupro 300 food type test). So far, after I avoided such food and made sure I clear my bowels daily, my itch at night has lessen.

    Do you have any facebook add? Wanted to show you my TSW pix to have an idea if I am on the road to recovery.

    Thanks so much again.
    Iris

  31. I am really glad I came across this because I thought I was crazy. I have never in my life had eczema until the beginning of this year and boom it was all over my body out of no where. I have only been on steroids for about 6 months but they were strong ones and I put it on like moisturizer since its all over my body.I however did not use the steroids on my face. Dermatologist also put me on a high does of prednisone. 10 days ago I quit cold turkey and it has been the hardest 10 days of my life. My skin immediate went red all over. I look like I have a massive sunburn. My face is bad too and i have eczema on my cheeks now which is the one place I never had it previously. It is so hard to know if this is actual healing going on or the eczema is just actually getting worse. I am miserable all the time, I barely sleep, and flakes of skin follow me everywhere. I am also on a strict diet cutting out everything that could possibly be linked to eczema. Very very hard to go through I just don’t see a light at the end of the tunnel, maybe you do?

    • i hope you feel better soon. withdrawals are very difficult, cutting out food that may be linked to eczema at this point in time may not help much because any anti inflammatory effects will be shadowed by the steroid rebound symptoms. i do see the light at the end of the tunnel, in fact i’ve seen it already.

  32. Hi I have been using strong steroids on my face for 20 years finally went cold turkey this summer first month wos very hard then it started calming dwn but I don’t kow what’s happens past few weeks it’s come back like really bad my face is sooooo bad it’s all red itchy the rashes are spending all over face and eyelids can’t sleep eat dnt wanA go out just feel like killing my self I can’t cope with this pain I mean y has it come bk so bad realy thought it wos healing PLS help me

    • hi there, everyone felt like killing themselves. i strongly encourage you to go to the forum to speak to other skin friends there, you’ll realize you’re not alone. just search for itsan forum.

  33. Hi Juliana,
    It’s remarkable how much courage individuals with TSW have. I am in awe. I have been off and on steroids since I was young. They are only in the Class 6 of ‘potency’ but after looking into how steroids can affect me in the long run, I am quitting NOW. I have flare ups every now and then and hate turning to steroids for help. I am taking an allergy test soon as well to see if anything dietary or environmentally needs to change. I can’t believe I’ve waited this long to do so.
    I wanted to ask about your career. How did TSW affect your job? I know there are days when I bare`ly

  34. — Cont–> sorry, may cat pressed ENETR:/ as I was saying, i have days i barely want to get out of bed. How did you cope with it in terms of a job and getting through it all? Any advice? I respect you and admire your perseverance.

    • hahaha i laughed when i saw “my cat pressed enter” HHAHAHA… regarding my job, i had to take a pause because of my skin. i’m weak, unlike the rest of the skin friends who continued their work DURING TSW. i respect them!!!

      i would advice you to plan for the down days ahead because TSW is tough as hell.😦 if you have someone to take care of you it’d be best. good luck!

      • 🙂 i just didn’t want you to think that i’m stronger than i actually am, because i’m not! there’re plenty of others out there who’re stronger than me! i’ve had many good days, it’s a little rest time for me right now to reset things, but things will be good again.

        xoxo

  35. It has been 5 days now since I stopped using the Mometasone on my face for probably over two years. I had these terrible itchy blisters around my temples that would never really go away. My doctor never really tested me for anything; just sent me to a dermatologist who prescribed the steroids for a “nondescript” ailment. At the same time I had iron deficiency anemia, and my doctor just kept on saying, “I don’t know why you can’t hold on to your iron.” Well, a few years later (this winter) I had a bout with pneumonia. That is when a Catscan was ordered and finally some extensive bloodwork was done. Ends up, I have Celiac Disease, an intollerance to gluten in wheat products. The blisters on my face were Dermatitis Herpetaformis, CLASSIC Celiac disease, but my doctors weren’t smart enough to put two and two together. Oh, by the way, Celiac Disease causes iron deficiency! So, for 4 years I have been living with these blisters on my face and using topical steroids for over two years. I will not attempt to fool myself. I know this is serious, particularly on the face and that Mometasone is strong stuff! My face feels like I fell on a cactus right now. I am having lots of the steriod acne and the hotness in my face is, at times, almost tmore than I can bare. I know there is no other route to go. I must do this withdrawal, and for those of you reading this, you need to be strong and do the withdrawal for yourselves and for your families. It is the only way out!!! Juliana, you are a Saint for posting this blog. It means so much to know that you are not alone and that there are others out there who understand. I wish that my doctors would have understood from the beginning, but in today’s world, I think that is a bit too much to ask. I have five sons who are being rather good about this entire thing. I think they can sense that Daddy is hurting alot. My 12 year old said something to me this afternoon that made me tear up. It wasn’t what he said, (not that I can even remember), but that I was feeling poorly at the time. He left the room and I broke down in tears for the first time since this ordeal began. I am not neceassarly a religious man, but may the higher power bless each and ever one of us…

    • hey Michael, I’m sorry you have to go through this.. the good thing is you now know what caused the blisters on your temples – gluten, so you know for sure that as long as you avoid gluten in the future, your skin will be fine once you make it through TSW. it sucks to have to go through TSW at all, but it’s also not the worse disease on earth. at least it heals!! and, a sign on the skin is perhaps one of the best signals our body can give us because it’s visible. imagine you had other gluten intolerance symptoms which show up within the body.

      thanks for cheering everybody on🙂 ordeals and difficult times highlights the good and kindness we experience. I hope you can view this episode of your life positively!

      I saw a quote I really like not long ago. it’s goes something like “sometimes our lives need to be completely rearranged, changed, shaken up to relocate us to the place we were meant to be.” stay strong! your sons will be there to help you during this period of time🙂 and all of us too!

      God bless!

  36. Good afternoon! So I came across your blog after searching the web about possibly going through steriod withdrawal. May I ask what you currently use when you have an eczema flare? Or does your eczema not flare any longer? Thank you for your help and time!

    • sadly, my eczema flared recently! i didn’t use anything on my eczema as i thought it’ll go away, but it didn’t. i’m currently using traditional chinese medicine to help my body recover.🙂

  37. Hi I’m just wondering if you tried dietary changes? Could you tell the difference between the withdrawal and eczema?

    • hello! i’ve made dietary changes for more than 3 months. i find it hard to tell the differences between withdrawal and eczema. the only reason i believe mine isn’t a withdrawal is because i haven’t used topical steroids for 4 years. you can’t withdraw from a drug when you haven’t even used it..😛

  38. Glad I found this blog!
    I currently feel crappy. I had a little mild acne on my face and a mild case of eczema on my arms. I was prescribed with Triamciclone for my eczema but since I didn’t understand my doc, I used the Triamciclone on my face instead by MISTAKE! thinking that it was for my acne. As I was putting it on, I notice my face kept breaking out. I was using it for a month until I decided to search this topical cream up, and it said STEROIDS! I panicked! I immediately withdrew from it and boy did my face get bad. It was all itchy and was really red. I was prescribe with Antibiotic and tretinion and after one week it was made an improvement. Less itchy now. just feels really rough when I touch it. You think one month of use did a huge damage? I feel so blah =(

    • hello! glad you found my blog too! hope it made you feel better somehow!

      i don’t think 1 month is too long, you’ll heal up soon! stay strong and you’ll make it till the end! i think you mean triamcinolone?

      it’s strange because most people’s acne improve after using steroids. this probably means your acne may be caused by microbes. you may see marked improvement in time to come! good luck!

  39. Fair enough. Thank you. Its my son who has the eczema, he had been on steroid cream for just over a year but I stopped in march 2015. (Hes not even 2 yet) hes still feeling the effects I Think. Bad oozing flare ups. Can I ask you what is your opinion on bathing? How many times a day/ week would you say is “healthy”

    • hello trista, i’m sorry about your son😦 thankfully children heal up much quicker than adults do. as for bathing, it’s a subjective matter. i think a daily shower suffice. if he’s really dry, perhaps 2 showers a day may help, once in the morning since it’s always the driest after waking up. and once at night so that he will be comfortable when he sleep. some people soak in water for as long as they can when their skin is bad, but it may slow down healing (just a possibility, but not proven). it’s hard with a child since he can’t vocalize his thinking, so pay attention to his reactions. if he shows aversion to showers, you can take that as a sign to keep it to a minimum.

  40. Hi Juliana

    My girlfriend was having eczema 3 years ago until now, she is 27 years old. From what I saw from your replies, seems that to find out the cause of the eczema is important, such as monitoring the skin/flares up, do blood test or allergen test. She hasn’t done any test yet, but she started some diet, but not a clean diet like your case. But too bad her condition still the same. The flare up grows up all over her body, arm and feet..She is so sad to see it and cries oftenly of this..

    Do you have any suggestion for her or do you think the condition will be better and skin will recover back like last time?

    • hi ks,

      you’re such a sweet bf to do the research for her! well, if she’s been using topical steroids the past 3 years, chances are things will only get worse with time if she don’t stop it. if she do decide to stop steroids altogether, she’ll have to wait through the withdrawal, and then address her underlying eczema, other wise it’d lead to a flare up later in her life.

  41. Hey, Juliana. Glad you’ve healed up well, it seems. I started TSW back in Jan. 2013. I’ve found different sections of my skin respond differently to emollients; some areas can’t tolerate them at all. My second flare is winding down now, but my neck is still problematic–dry, red, thin, itchy, cracked, etc. Did you ever find anything that helps your neck area out. Nothing seems to be soothing for mine. Take care, and thanks for posting your story.

    • hi marshall! i guess your skin has different sensitivity levels. the better ones can tolerate creams, but not the super sensitive parts. did you use a lot of steroids on your neck? i did. when my skin can tolerate vaseline, i’ll apply it on my neck after my shower in hopes of locking in the moisture a little longer. gotta say it’s not be most comfortable feeling because sometimes my neck heats up after applying vaseline. but the extra hours of moisture i get is something i’m willing to endure thr pain for. have you tried everything possible? aloe vera gel? cold compress?

      • Juliana, Thanks for replying. Yea, I’ve tried all kinds of things: beeswax, aloe, coconut oil, petrolatum, etc. Everything seems to irritate it worse. I have put a little “Hope’s Relief” Moisturizer cream on in a light coat, and that reduces the dryness a bit, but is still slightly irritating. I use this on my forehead, and it’s very effective at reducing the dryness there. Coal tar products seem helpful elsewhere, but on my neck… nothing seems to soothe it. This whole TSW is a nightmare, and big pharma seems to be keeping a lid on the risks around using topical steroids; at least the risk of TS addiction and withdrawal anyway. I mean, they’ve known about this risk for a while, but they aren’t letting the public know about it. It’s a crime, imho.

      • totally agree with you about the pharma not being totally upfront about the all these possibilities. i guess it’s up to us to spread the warning!

        regarding your neck, perhaps it’s best to leave it alone for now. when i was really sensitive, everything irritates my skin. even air and water.. so yeap. hang in there, it will be over eventually!

  42. Hello! ☺️
    I’ve been using a steroid cream (Betaderm; Betamethasone Valerate 0.1%) on my face for about a year or so (due to a rash I had on my face and I would use it on pimples occasionally, on my chin) and I had recently stopped using it, I’d say about 6 days ago and now I’ve got tiny little bumps ALL over my face even though I didn’t use it all over! For about 3 days I’ve been using Calendula cream which was recommended to me to reduce swelling and itching, I thought it was starting to work but I guess it’ll take more time? Others have recommended Licorice cream to reduce inflammation!

    I’m really worried about the bumps, itchiness and it’s spreading and around my eye area, the ones around there are a little red and flaring up!! I’ve never really had problems with my skin (no acne just occasionally pimples) before so this is a little daunting for me 😔😫

    What do I do? And how long until my skin will get better? I feel like itching my face a lot and it’s hard to even be at work because I’m outside most of the day (working with children), and my face itches or I can literally feel the bumps around my mouth and chin!

    • I’d just like to add that I’ve been feeling lethargic and not sleeping well at all these past few days! I wake up early (630am) for work and I feel tired most days but these past few days it’s felt different and my eyes feel super drowsy like I almost feel nauseous! 😔😔

  43. Hi…im having problem with my skin…I have eczema too but I already stop using steroid for 2 years…my skin look like an old people(thick skin)especially on my hands,neck ad legs…how to solve this kind of skin?will it get better soon or it will remains like that for the rest of my life :()

      • @Sue Juliana has done a great job documenting how long this process can take. I myself am at about 2 year into withdrawal. Everyone is going to have a unique experience with TSW based on your genetics, duration and intensity of steroid exposure, and exposure to environmental and other irritants. What’s helpful to one person in terms of moisturizers may not be helpful to someone else. I’ve found that some moisturizers seem helpful for a while, only to lose effectiveness. Also, different areas of skin respond differently to moisturizers at different times in the process. Also, because steroids kinda ruin your skin’s healing powers, any other condition or reaction is going to likely be more intense.

        Some people advocate avoiding moisturizers altogether, that it will delay healing. I myself haven’t gone that route, and have explored a variety of things to help ease my suffering. Initially, coconut oil seemed helpful, but eventually it just didn’t help. I discovered “Hope’s Relief Moisturizer” from an Australian company, but it’s only good for my forehead. I found a mild salicylic acid product is good for the flakiness, and also mild coal tar products. I’ve used T-sal and T-gel shampoo combined for my scalp, Psoriasin Ointment for my underarms, and then Mushatt’s No. 9 scalp cream (salicylic acid in a cream) and Mushatt’s No. 9 Skin Cream (coal tar) on my neck. I use the Mushatt’s scalp cream around my ears followed by Surgeon’s Skin Secret unscented bee’s wax moisturizer to ease the cracking. Surgeon’s Secret is really great for small wounds in general, btw. None of this stuff completely eliminates the problem, and I haven’t found anything helpful for my hands. They’re really bad lately. At the end of the day, you have to discover what is helpful to you. I should add that I keep my bathing short, and lukewarm, and actually shampoo using cold water as a separate step before getting into the tub–hot water irritates my skin.

        The bottom line is that time is the great healer, and that you avoid steroids, and discover for yourself what products (if any) are helpful to you. I would also investigate whether you have any other condition on top of TSW. I saw a woman profiled on “The Doctors” TV show who has TSW, and it turned out that she also had a case of MRSA, a brutal skin infection. Steroids will potentially make people more susceptible to other problems. Good luck to you, and a big thanks to Juliana for her advice and documenting her story. It gives encouragement to see someone fight through this awful condition.

  44. Hey juliana. I was just wondering how you are doing as of today.. Im so worried about future flares. and im trying to understand why people are flaring 3,4,5 ect years later?? That cant be withdrawing still can it?! did the steroids permantely screw our bodies up? ugh scary journey. I myself am in my second flare and its awful. alot worse than the first. I just wanted to hear your imput.❤ much love

    • I’m having another down time. skin is just red and dry and flaking. looks a lot like how I was during my late TSW stage. no oozing, just the general exfoliative thing all over. I am trying to understand why I got back into this state after having clear skin for a long while, I doubt it’s withdrawing because whatever withdrawal symptom should be over and done with since it’s been so long. I believe it has something to do with my body unable to function normally after being ruined by steroids. I don’t think it’s permanent though, if you can find the right treatment.

      • Hello.a month ago i had chemical burn on my face.then i went for help in pharmacy and they give a hydrocortisone 17 butyrate .i applied it for three weeks continously.its been couple of weeks now i stopped it. I have super dry skin and burning sansation all over my fac.how long does it take to things get back to normal.my case is different im nt ezcema pateint.i used dat for my sunburn.

  45. Aloha from Hawaii, Juliana, for your truly well-written website. I found you early in my journey (back in 2014) but got distracted by the idea that candida was the cause of my eczema. My experience is like yours: the anti-candida diet did nothing for me except give me extreme anxiety and make me lose nine (9) pounds. This is weight that I cannot afford to lose since I am already thin. I’m disgusted that for a year and a half, I lived with anxiety about taking probiotics and anti-fungals and eating the anti-candida diet. I denied myself delicious food that I enjoy and the social occasions that went along with eating. As you say, Juliana, FML!
    One and a half years and seven (7) doctors later, since my first adult eczema outbreak in 2014, I KNOW that I suffer from TSW. I will never use any form of steroids again. While the doctors are well-intentioned, they are generally not trained in TSW; they generally reach for the prescription pad and do not do a good job of educating the patient on the proper time limits of steroid usage. Only my #6 doctor took the time to explain about time limits, but by then, I had already used a lot of topical steroids prescribed by other doctors. My skin kept cycling between “irritated” and “horrifying.” I was so frustrated that the anti-candida diet was not improving my skin after ten (10) months on it. So, I persisted to observe my skin and research the internet.
    Something–and I’m not sure what it was–brought me back to your website, Dr. Marvin Rapaport’s youtube video https://www.youtube.com/watch?v=0JNVj6eAHDs&authuser=0, and the ITSAN website–all in one evening!! Must be GOD. So, so happy to know that I’m not going crazy, that there is a label that I can attach to this Sucker! I’m sore, red, burning, and my skin is weeping. But I’m informed, strong, and determined. I know that my body needs strengthening physically and emotionally. My basic plan of attack is to 1) buy a Vitamix to make green juice (cucumber, celery, Fuji apple, lemon, kale, and ginger); 2) shiatsu and acupuncture (when skin gets better); 3) walking and light weight-lifting (even if I’m sore); 4) buy myself a treat here and there and 5) PRAYER. We will win this fight, Juliana. You are beautiful, brainy, compassionate and a true role model. Your words reach many desperate lives that are soon changed for the better. Let’s all hang in there together. Blessings~ KJ

    • hi kj! thanks for your appreciation🙂 i’m glad you found the community, it can be very supportive! i think your plan of action is great. plus, don’t give up on the anti candida diet yet, even though you might not have candida, but that diet is essentially a healthy diet. i believe good nutrition can help you recover faster.🙂

      good luck!

      • 2 years ago i used beach on my face which made my face red and burning sensation.doctor diasgnosed me with ALLERGIC CONTACT DERMATITS.doc prescribed me betamethasone valerate once n hydrocortisone buytrate in night on face for two months and right from start i used to have red skin and burning sensation and i dnt knw if it was steroid or my dernatoses, then it was changed to halomethasone for 1 month and finally on fluticasone propionate for 4 months.twice daily.unlike rest of cases i actually i proved on steroids and fidnt felt any withdrawl synptoms at full swing atkeast.infact after withdrawing straightly redness began to slow down and keep becoming more or kess in times n after just 3 motnhs it was gone i felt no oozing but dryness on fsce i felt.and rah didnt soread.i healed after 3 months and it was just photosenstivity and sesntivity to gernao chemicals left .but things took turn when after 11 months of wothdrawing steroids i had reaction to bleached water at my home.thst time i used steroid twice a week for i think jsut 8 times. Things git normal again but after soem months it began to go red patchs on cheeks one at a tiem i applied sterodi they goes but appear ona nother olace but frm when it startd haooen n tikl now i jsutvused steroid i thibk 20 times at max in 4 months i have elft steroid just a week before so fsr a bit more redness than usual but nothing more andnot to mention those oatch of red skin on cheecks they still therr.so my question is:

        1. DO ERYONE WHO USE STEROID HAVE TSA OR TSW?

        2.IF I HAVE RSW HOW LONG CAN I EXEPT BEFORE FULL REOCOVERY.

        NOTE: AFTER STEROID USAGE I WAS OLWAYS EKFT WITH SUN SENSTIVITY AND EVEN I CANT USE MY ALPOI WTHOUT GETTING RED IN FACE AND I CAN RECT TO ANY SOAP.BUT I DIDNT GONE TO SUN EVEN ONCE AND IT HAF HELPED ME KEEO FLARES DOWN.

      • hey there, i’m sorry for your desperation. i can tell how awful you’re feeling from the way you type. to answer your question, most people who used topical steroids for prolonged period tend to have TSA, and those who have atopic dermatitis to begin with are even more likely to be addicted to steroids.

        it’s hard to say how long you’ll need to recover. it depends on your health, the strength and duration of steroid use.

  46. Hi Juliana!

    First of all, thank you for sharing so much information and your own personal life with us.

    I’ve been reading through quite a chunk of your blog, and I don’t think I’ve seen it mentioned anywhere, so I wanted to ask: did the swelling and edema affect you to the point where you couldn’t fit into your clothes and had to get bigger ones? Or did you have to get baggier clothes because your skin was too sensitive to what you usually wore? I just only stopped using steroid creams two days ago, and I want to be as prepared as possible for when I enter the hellish phase of TSW, and that includes having clothes that I can move around in as comfortably as possible.

    Hope to hear from you soon!

    -Tim from Malaysia

      • Hi Juliana, we spoke before I hope you remember. Right now I’m almost five month withdrawal and things are getting even tougher, the oozing seems like wont disappear and my whole body oozes a lot and formed hard yellow crust. I have started moisturiser withdrawal a week ago, it is so hard to move because of dry skins and the oozing wounds. What I encounter Everyday is increased burning, ooze and bleeding. It is so difficult to remain positive especially at night when the burning the blood vessels open up and pour fluid. How do you stay motivated and what is ur thought when you are having that burning pain? When will the ooze stop? Once all the blood vessel opens up will it stop?

      • hi jane, i’m so sorry to hear about what you’re going through right now. oozing definitely sucks, and is probably my worst nightmare. looks like your body still has a lot of junk to get rid of.. i can only assure you that you’ll recover eventually, but you really need to hang on tight for now because i know how bad it feels, but it has to be done. moisturizer withdrawal should be good for you!
        one of the positive thoughts i told myself is that, when your skin is flaring badly, it’s actually detoxing hard. and the faster your body finish detoxing, the faster you can proceed on to observe the actual healing that you so desire.

        hang in there!!!

      • I will hang in there, have to keep motivate myself not to afraid of the oozing, burning and bleeding. This is my second withdrawal because I didn’t know once u stop steroid there will be withdrawal occurs. I stopped steroid cream for one year and then the eczema spreads. Then when I apply same steroid cream it didn’t work anymore. After reading Dr marvin rapaport video on YouTube only realised that was withdrawal. I have no choice but to endure the pain. Total up I used 4tubes of steroid creams. One is unknown potency because prescribed by dermatologist, one is class 2 steroid antibiotics for fungal, other two are class 5 steroid cream for eczema. I used for 5 years on and off, that why I feel my withdrawal should be faster because I used less steroid but I never expect it will be that bad. Crying really helps to release the emotions. I’m amazed how my body can ooze and bleed so much during night time…hopefully will get better soon..

  47. Quick question: never used steroids much except fluticasone (2 tubes) but my eczema remained the same and then all of a sudden got worse. Began eating fermented food daily and noticed the patches began to fade some after about 6 weeks. I only used the fluticasone cream because my skin stayed moist. After the second tube my eczema spread and covered about half my leg from the knee to the ankle. Have you ever heard of someone being steroid resistant? Thanks

  48. Hi Juliana,

    I have written to you a few months back, though I dont find my comment now.

    In brief, I have used Momate steriod for around 5 months irregularly till Jan 2016, visited a couple of derms and tried many home remedies. My skin has always been sensitive with redness on my Cheeks. Now I am unable to get rid of this redness. Its like patch on my face. and also its dries near the chin, The cheek pores seem to be open with suddenly some pimples popping up every morning I wake up. I am really stressed with this condition. Currently I am taking ayurvedic medication to heal it from inside. Can you please suggest will I ever get rid of this redness😦 also with the steroid cream I have got hair growth on my face from half of my cheeks, I don;t know what to do. I will be getting married in another few months and I seriously want my face to get better. Please suggest.

    • hi kirti,

      it sounds like you are suffering from steroid induced rosacea based on what you described. your face will recover, but it will need time. i don’t know if your body can recover in time for your wedding, but if you continue to stress over it, it’s only going to slow down your healing. try to relax as much as you can! i know we all want to look normal again ASAP, but our body take time to recover from the damage we’ve dealt over the years. i hope you understand that!

      good luck!

      • Any suggestions on what can I apply as I am really scared to even try a new moisturiser now. Till a month back I was using MOIZ cleansing lotion and FISIOATIV cream prescribed by derm, since a month I am using a vitA+E face wash and Aloe vera moisturiser and applying vaseline in the night(I hope this will not harm), not using any powders or compacts. Can you suggest if there is any other face wash or moisturiser which might help? Also on the diet, any specific things I need to consume more? or do I consult any other dermatologist for this?

        Thanks

  49. Hi Juliana, it’s me again after my last “chat” with you in Oct 2014.
    The skin on my foot has kind of recovered from Eczema but recently since February, when the weather turned expermely bad and hot, my itch started coming back. I saw a holistic doctor in Nov 2015 and was on very strict diet ( only whole grains like brown rice, veggies,fish and fruits plus the supplements given by my holistic doctor) I could finally get decent sleep by December 2015.

    However, my skin turned bad in Feb (after CNY this year) , since then I haven been sleeping well due to the heat and also my skin is badly affected. It is extremely dry now and the only thing to help the itch is by applying apple cider (which is drying but effective). My itch starts at 12am these days and I wont sleep till 4am in the morning. I tried many types of moisurisers like olive oil, cococnut oil, Ceradan etc but I still itch at night. It’s really hard to practise moisturiser withdrawal for my skin right now espcially my job requires quite abit of walking. Any advice? Are you also affected by the horrible 35 degrees Celsius temperature in Singapore these days? How do you cope since sometimes you still have oozing ( is it due to infection like me?)

    I also find our “recovered eczema skin” to be easily damaged by our scratching just over a few days. Partial of my foot has darkened from the constant scratching.

    Thanks for hearing me once again.

    Iris

    • hey iris, sorry to hear about the recent aggravation of your skin! i think the heat does something to us. sadly, i’m in a phase where i can’t really feel the heat at the moment. makes me feel drier though!

      i think you need to talk to your doctor about the disturbance of your sleep. i believe the itch at night isn’t caused by the lack of moisture from you skin. i know that our liver detoxes at night from 10-1am, so all that detoxing probably did something to your skin. i’m afraid i can’t offer you any help other than to reduce scratching if possible, and see if certain foods exacerbates your itch at night.

      i doubt my oozing are due to infections as i treat my skin with diluted vinegar (which kills off the nasty stuff) and also essential oils that have anti microbial function. i try to let the ooze dry up as much as possible and leave it alone if i can.

      hope that helps!

  50. Hi Juliana, thanks for sharing your story. Going through TSW myself, I have a few questions, hope you don’t mind.

    Firstly, now that you don’t have TSW any longer, do you still get eczema flare ups? How do you manage that?
    From what I can see, was your entire course of action basically cold turkey and using Vaseline?
    Did you during your 5 years try ingesting bicarb of soda to alkanalise your body? (out of interest)

    I have only just started my journey (6 weeks or so) but where my eczema used to be 10c pieces, it is now all over my hands and face. I thought going off steroid creams was the best course of action but I am suffering right now and cant really imagine having to do this for another year or so. I still have questions about treatment of the underlying eczema (as well as using cortisone sparingly to manage it on a day to day basis) Any thoughts would be welcome, thanks🙂

    • hello jay!

      hope your TSW journey has been fine so far!

      do i still get eczema? yes, because i haven’t addressed my underlying issue yet. i’ve been using TCM to help my eczema.
      i did not try ingesting bicarbonate of soda to alkalize my body, because it would reduce my stomach acid and affect digestion. it’s wiser to follow an alkalizing diet fill with fruits and vegetables if possible.

      TSW will worsen your skin initially because your skin has been suppressed for a good deal of time. your underlying eczema can be corrected by making lifestyle and dietary changes, but withdrawal from topical steroids will take time.

      good luck!

  51. How do you know it’s TSW and not something else ? I feel this is what I have abs I stopped the steroids about 4 months ago .. Every doctor I go to scratches his head and calls it something else. None of them seem to give much credence to TSW. they act like it’s not a thing and you have to have had horrible exzema to get it. I started with some kind of mild rash. I started using cortisone , then when that didn’t work I went to the next thing. Over the course of s year using several different ones , but applying every day as it kept getting worse.

    • I know it’s TSW because it’s the only logical explanation after looking at my past history, and observing how different from eczema it is. If you’ve used steroids for more than several months, and your skin isn’t improving in general, it is possible that your skin is already addicted to topical steroids.

  52. Hi, I had eczema around my eyes and used steroid creams (mometasone and hydrocortisone) for years until I started to have a rebound effect with lesions because my skin had thinned so badly. A doctor told me to stop using the steroid cream (mometasone) I was using immediately. I did and had a massive attack of redness, itchiness, puffiness all around my eyes. It was horrible. The dermatologist prescribed Protopic which initially seemed to help but also felt like it was only somewhat suppressing the redness and burning my skin rather than healing it.

    I knew I needed a natural remedy and searched high and low with a lot of trial and error. Today I’m steroid free with healthy looking skin thanks to Era Organics Psoriasis & Eczema Cream.

    I use it generously in the evening when I go to bed, when I wake up and after showering. It’s like superfood for your skin with a unique 10-in-1 formula that includes organic Aloe Vera, Manuka Honey, Shea Butter, Cocoa Butter, Coconut Oil, MSM, Blue-Green Algae, Cehami Extract, Olive Oil and Hemp Seed Oil. Includes Vitamins A, B, C, E.

    I’m not just randomly promoting this product. I’m sharing this because it worked and continues to work so well to heal my skin.

    I hope it works for you too!

  53. Hi Juliana,

    Thank you so much for sharing your experience here and it is very helpful.
    I also had been using topical steroid cream applied on my nose only since i had a swelling on this part.
    I had been using the TS for 4 month now, and lately i had been feeling tired, fatigued, sleepy, dizzy and disoriented.

    I had read up TS withdrawal and surprisingly those are part of the withdrawal.

    I just want to know if you had any withdrawal related to adrenal insuficiency? Like fatigue, disorientation, dizziness, and just feeling tired allover?

    • hi dennis!
      you’re most welcome, glad to be of help in some way or another! i’m sorry you have to go through TSW!
      the symptoms you described are very real. i do not know if i had withdrawal related to adrenal insufficiency or not. i did get tested, and my adrenal levels seem to be fine. but i still experienced those symptoms. it appears to me that it’s all part of the healing process. eat well, exercise, and sleep well. that should help with your recovery!

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