My Story

i’ve had eczema since young, but it was never serious. just some rashes on the flexures on my arms and knees. that was when i was a kid.

fast forward to 10 years later, i was about 14 when the rashes started to spread to other places. i will have a rash on my hand, near my lips, and rashes on the flexures remained. it wasn’t that bad. that time i was using hydrocortisone that my dad bought OTC. sometimes it works, sometimes it doesn’t.

when i was 17, the rashes started to get alot worse. there will be plenty of them all over my arm. it was described to be nummular eczema. i got referred to the national skin centre where they diagnosed me with atopic eczema, and that was when i started getting limitless supply of steroids. that was also the time i was prescribed oral prednisolone for the first time. for the most of the time, i was applying betamethasone valerate (in three strengths (0.025, 0.05, and 0.1%). i remember there was a point in time when i stopped responding to the steroids and i told the dermatologist about it. they prescribed me a stronger florinated steroid (for the rash above my lips). thankfully i didn’t use the strong steroid for too long. my rashes cleared up after a few weeks, so i went back to betamethasone for maintenance (both the doc and i were surprised that my skin is reacting to it once more. he said it’s good.)

after that period, my skin would be good at one time, and bad the other times. flares occur more frequently, i could never understand why. the rashes also spreaded to other places like my thigh, my calf, and my torso.

by the time i was 19, the situation seemed to have gotten better after i started using a new steroid on my face (0.1% elomet, also known as momethasone furoate). i stopped visiting the skin centre on my own accord, and since there isn’t much rashes flaring up after i got on the cream, i didn’t have to apply much steroids. i continued to use betamethasone on my body for rashes that come and go. they do come back more often than they used to, but they go away after applying steroids. they’re widespread all over my body.

it was during my 21st year of my life (year 2010) that things started to turn really bad. the rashes on my calf has grown, it’s spreading like wild fire. i didn’t dare to put steroids on it anymore because the surface area is so huge. soon, the rashes on my arms also started to spread (around november 2010). then my face. i was terrified and quickly ran back to the skin centre to ask for oral steroids. that was my second time consuming prednisolone.

the steroids worked for the duration when i was consuming it (9 days). a month later, the rashes seems to be coming back slowly. 2 months later, it was a full blown rash, complete with swelling on my face. i didn’t know what it was, i thought it was an allergic reaction to the antibiotics i was on during that time. this was february 2011.

that was also the time when my then boyfriend suggested to me that i’m suffering from topical steroid addiction, the fact that i haven’t been diligently applying steroids since the area is too widespread is giving me topical steroid withdrawal symptoms. i didn’t believe it at first, i even found it hard to swallow. don’t steroid withdrawal only occur to people who consume huge amount of steroids? i went back to the dermatologist (in march) to see what they can help me with, and you probably guessed it right – they gave me more steroid creams to apply, and another course of prednisolone. my third and last time i’ll ever touch that thing. it was a 12 days course. after my skin got much better after the course of oral steroids, i was trying to maintain my skin with topical steroids once more. i exhausted tubes of dermasone and betamethasone within 2 weeks. i applied it ALL OVER MY SKIN. FML.

well, you guess it. the effect didn’t last despite using topical steroids daily (it didn’t even last 1 month before the rashes start coming back). in april 2011, i’m experiencing the same symptoms again. this time i’m really puzzled, because i’ve tried so many natural remedy and it doesn’t work. WHY? while googling, i landed on dr fukuya’s page and suddenly the dots just connected. later on i found kelly’s page and i haven’t been happier to land on her page. i was having topical steroid withdrawal. now it all makes sense.

1 month into my withdrawal in may, i went back to the skin centre for a review appointment. i told the dermatologist that i’ve stopped using steroids, and what i’m experiencing is topical steroid withdrawal, but they disagreed with me. they didn’t believe me. they pushed for more steroids, immunosuppressants, and UV treatment. i denied them all.

my ex was right. he was very supportive about me quitting steroids for good. he told me it won’t be an easy journey, but he assures me that he’ll be with me and walk out of this together. after discussing this with my mother, she has also taken an active role in supporting my decision. i really thank god for them. and it’s not just them, my friends too, they have been trying to give me a lift whenever i feel down.

i’ve stopped steroids cold turkey in mid april 2011. the real test is what follows after cessation to recovery. it’s not an easy road, i’m not really prepared for it, but i’ll try to face it.

please visit the links of the other skin friends who’re going through the same thing as me.

if you find that the steroids are no longer working for you, and now your rashes seems to be spreading to more areas, you realize on the days you go without steroids the rashes come back to haunt you, this is a sign that you are addicted. i have tried plenty of natural remedy and solutions that have worked for others but somehow they didn’t work for me. WHY? because what i’m having is NOT just the atopic eczema that we come to know of, but steroid withdrawal (or rather, steroid induced eczema). the only reason why none of the alternative methods/remedies worked for me was because i wasn’t addressing the cause of my eczema. with atopic eczema, the cause is usually allergens from the environment and/or food. despite making drastic changes to address those possible allergenic sources, i see no improvements in my skin. turns out the source of the problem is right in front of my eyes all these while – steroids.

after hearing my story, i hope you pick up the symptoms early and salvage things when it’s still not too late.

to summarize the symptoms of topical steroid addiction:

(all these happens during the time when you’re still using topicals)

– spreading rashes over time. usually nummular rashes.
– you use steroid creams more frequently. from several times a month to several times a week, then almost every day.
– over the years, the “eczema” gets increasingly worse. flare ups are more frequent.
– you stop responding to steroids of a certain strength and require something stronger (this is actually tachyphylaxis, but it’s the stronger steroids that deals the damage to your skin)
– you feel scared that you’ll run out of steroid creams, because this means that you can’t “control” the rashes in case they flare.
– you need steroids to look normal. at this point of time you are using steroids almost daily.
– your skin gets increasingly dry over the years. no moisturizer works (eucerin, QV, physiogel, xemose, bioderma)
– when you stop steroids, you flare up.

TL;DR
steroids used:
1) hydrocortisone (unknown strength) x 1 tube

2) betamethasone valerate cream (0.025%, 0.05%, 0.1%) x countless tubes and tubs, used over 6+ years

3) floocinonide [i may be wrong, i only remember it’s a steroid that started with an f, and it’s probably not fluocinolone – which is weaker than bethamethasone – since the derm prescribed me this upon knowing that the betamethasone wasn’t working for me.] (0.025% and 0.05%) x less than 30g, used over 2-4 months.

4. momethasone furoate cream (0.1%) x 1 tube, used over a year.

124 thoughts on “My Story

  1. Hey Juliana, thanks for sharing your story. A little similar to mine. I agree with you when you say the real test is what happens after cessation to recovery. Okay, so let me ask you a few questions.

    Did you have eczema from age 4 or the time you got it as a young kid all the way up until age 14? Or, did it go away until 14 or go off and on until 14? When was the first time you EVER started using OTC hydrocortizones?

    Last question, have you ever taken a blood allergy test (not patch testing)?

    Rochelle

    • Rochelle,

      I’ve had eczema since 2 actually. but it went away until I was about 7.. but it’s on and off, plus only localized on the arm and knee folds. refused to use steroid when I was younger. HAHA! I am smart as a kid but grew dumb as I got older.

      I first used OTC hydrocortisone around.. 14?

      I only did a blood test 4 months ago.. should have done it earlier but dermatologist say atopic eczema is usually not caused by food allergy. she also said it’s most likely that nothing will turn up as positive, but she is wrong.

  2. Okay, the idea I’m trying to get across is that you may have been exposing yourself in your life to allergens that have caused you eczema. Your dermatologist is also wrong. Food allergies do CAUSE eczema as well, especially GLUTEN. Also, dust, pollen, animal dander, MOLD (a big one-hidden in houses and apartments), make-up, face/BODY LOTIONS (another big one), and even clothing materials. What did you blood test show?

    • I know this an old post but couldn’t agree with you more! I’ve had a terrible eczema outbreak and was put on the same meds as you. I know I’m allergic to a lot if thing (by blood test) and even though at low levels its a lot if stuff! So I have been on a gluten free diet for the two weeks and things are starting to clear up. I hate it but it is finally working. I hate hives!

      • hi dorothy, well, at least you found out what you were allergic to! i’m quite lucky as i’m only allergic to shellfishes. gluten free diet might do you many benefits since it’s actually good for the digestive system (in my opinion). i hate hives too!!! i just hate the feeling of my skin, bumpy and all.. URGHHH! glad to know things are working for you!

        god bless! and thanks for leaving a message🙂

  3. my bloodtest says shrimps and shelled fishes are a class 3 allergen. peanut, yeast are class 2, and wheat being class 1. i guess i ate too much bread last time. i haven’t been eating seafood for almost a decade (even before knowing it’s an allergen).

  4. Wow. Very interesting information. Food allergies DO cause eczema Juliana. I can’t believe you’re doctor told you this isn’t true. Unbelieveable. Anyways, I can bet you the reason you have had eczema most of your life is directly related to your diet! Gluten is in breads, anything that has flour, practically anything. Rice however does not have gluten. Even though you have a class 1 allergy to wheat a.k.a. gluten, which is the allergen in wheat, you’re still allergic. Yeast is also in many foods, cakes, cupcakes, breads, cookies, pastries. So watch your diet…and cut those foods out. There are many gluten-free products today, thank God…for the sake of taste! If you cut it out from now on, I can guarantee you will heal quicker and stay eczema-free after you healed. Also, did you get tested for environmental allergens? Good luck

    • Rochelle,
      I was very interested to see your comments to Juliana about the food allergy testing. I’m on week 9 of steroid withdrawal. When I started, I consulted an MD who specializes in homeopathy & other alternative modalities. Among other things, he had me get a food allergy blood test from Immunolabs in Ft. Lauderdale, Florida. It came back that I was reactive to 37 things! Some of them were very surprising, like rice & quinoa (things I was eating a lot to avoid gluten!) I am diligently staying away from these things and I pray food allergies will be the key to my eczema. What has been your experience with food allergy testing?

    • I’ve had lots of problems with eczema and I’ve been off of gluten for about 6 months now with no improvement, I believe it’s a much deeper problem that needs to be resolved from the inside of the body. The reason certain foods may make eczema worse is because something on the inside needs to be cleansed.

  5. Hello Everyone, I too am suffering from topical sterioid withdrawal. I am a 52 y/o female who has suffered with sebborhiac dermititis since I was a young child. It manifests primarily on my scalp. However, my ears are also affected and itch with redness. My primary physician prescribed Elocon ointment to be applied to affected area 2x a day as needed. I am African American and shampoo my hair about twice a month or so. I would apply the ointment to my scalp prior to blowdrying my hair. No problem. But…my ears itched daily and I was putting this steriod on my ears for 15 or more years!! I noticed my ears were red all of the time and I was not able to wear wigs, weaves or sometimes I couldn’t even tolerate my own hair touching my ears. I visited a dermatologist for a different problem and mentioned my burning ears to her. She told me my medication was making me sick and told me to stop applying it to my ears. She then prescribed Protopic ointment for me. Two weeks later I began to experience painful blisters and weeping on both my ears. I went back to the dermatologist and told her what was going on. She told me I was sufferering from steriod withdrawal and it might take up to nine months or so for my body to adjust to withdrawal symptoms. Some weeks I have mild symptoms and some weeks my ears are on fire! I try to tell everyone within ear range about my mishap with topical steriod use. I hope my journey can help someone else.

  6. Hi Juliana

    Joey Brown and Kelly UK told me about you so I came and read your sharing.

    I am so sorry to hear about your story. I think I might have met you and your boyfriend before. I think after I met you, which was years back in Katong Mall, I went through the worst eczema in my 3 decades of oral and topical steroids application and did phototherapy for the second time, this time while I was 8 months pregnant. I went back to heavy use of steroids. Now, I have had 11 ops in all, all cos of my allergies and eczema, 4 on my eye cos of retina detachment cos I kept slapping my face cos it was sooooooo itchy, and then cataracts removal, cos of excessive and chronic use of steroids. I have gone through TSW and my little son, too, at 3year old. He was given strong class 3 steroids from the time he was 4 months old. Thank God he is fine now. Do press on. You’re doing the right thing. I wrote to encourage you to press on, and do keep in touch🙂 God bless you🙂

  7. Hi – for the past 6 months I’ve been trying to figure out what why i continue to get a boiling hot heat rash with blisters on my neck – i keep applying the desoximetasone cream .25% that my doctor prescribed for my rosacea years ago. I have slowly increased the usage to now every day. if i go without a day i will have to deal with the flare up for a week or longer. he prescribed monodox (oral antibiotic) when i showed him the rash and it helped but the rash keeps coming back. do you think this steroid cream is causing the rash? it is unbearable. i’ve been using tea-tree oil on it and it helps contain it. i just went to an acupuncturist and chineese medicine doctor today because i don’t know what else to do. i can’t keep going on antibiotics. thank you for listening – i appreciate any help!

  8. Hey!
    I cant believe you got such bad symptoms. It really doesnt seem like you took too many steroids. Very odd.
    I also agree with the lady up there that commented that diet is very important!

  9. Thank you for posting! Unfortunately I am all to familiar with long term steroid use. As far as diet, I tried the anti candida diet and had some success with that. Itching and redness did go down. I was on the diet for 2 weeks solid (no cheating), and then I just quit it all together because it is so difficult. Now I just try and limit my sugar intake, or foods that spike your blood sugar levels. Good luck to you.

    • I also tried the anti candida diet for 2 moths! but it did nothing for me.. I guess it helps to have a healthy diet for overall health concern though. but it didn’t help with the withdrawal.

  10. Are you in college Juliana like I am? Did you have to take all online classes during the worst of this TSW? I’m a sophomore in college and am in my first semester so far.

    • yes i’m in college, but i took a year off school to recover. i had to skip alot of class while i was still in school last year, it wasn’t nice on my grades.

  11. Hi there, I’ve been reading some of the blogs and websites about topical steroid withdrawals and I think it’s great what you guys are doing. I thought I should share my story and experiences so far with this condition. I’m a 22 year old male from New Zealand and I’ve had eczema my who life and have been prescribed steroid creams to treat it. The thing was it was always just a few patches in the common places and it wasn’t really all that bad but every time I had eczema I would use the cream and I didn’t really understand how bad it was because I had never properly been told and I was just a kid so I would use a lot of it because it worked. Everything was okay up until about just over a year ago. I was going to the gym a lot and I think I may have caught a staph infection from the gym but for some reason my eczema started getting worse maybe it was the clothes I was wearing at the gym or the gym environment but I had been going to the gym previously with no problems ….. anyway so I used more and more steroid cream. At this stage it was still manageable with the cream but one morning I woke up and it was worse on the front of my chest and I think it was from sleeping in a bed which was full of cat hair as I’m allergic to cat’s, it was a friends spare bed were his cats slept I think. So I went to the doctors and I didn’t see my doctor but another one. They prescribed me prednisone and once I came off that I believe the topical steroid withdrawals really started and up until that point I think I may have gotten away with coming off the steroid cream with no problems. Anyway I ended up getting prescribed two more courses of prednisone and all three times when I came off it I had terrible flare ups dark red and all over my body. At this point I still didn’t know about this condition. So to try and make a long story shorter I saw lots of specialists and to no avail. I did however stop using steroid cream for a while because a nutritionist I saw told me not to. So I started going through stages of healing like flaky dry skin and the flare up’s. After about 3 month’s it started to get better but I was still getting flare up’s I ended up taking a course of antibiotics which made it a lot better but I still had the problem but it was way better. I then started using the cream again because I still didn’t know that it was causing the problem so I used it for about another 8 months and in large amounts up until I found out about this condition and almost straight away I knew it was what I had so I stopped using the steroid creams altogether again and it’s been about 3 weeks and I am going through similar withdrawals as last time although at the moment it is not as bad as last time because I believe I detoxed a fair amount the last time I stopped using them. There’s a lot more I could talk about in regards to diet that I have been doing but I think I will leave it at that for now. Basically the plan from all my research about health and the human body is that I have to create an environment within myself which will help my body heal so healthy living and being stress free to encourage my body to heal as fast as possible. Also I’m taking zinc, msm, vitamin C powder, a multi vitamin and eating basically a living food plant based diet with lots of fresh green vegetable and fruit juices made with a juicer. I believe healing at a cellular level must take place and detoxing the body will help so I will be doing some short water fast as well and eventually when I feel like I have detoxed enough I will eat an organic predominately plant based diet and may or may not add in cooked foods and meat. I will see how it goes as at the moment being on a plant based diet feels like the right thing to do. I hope that everyone is staying positive because I know that at times it can really suck especially if your used to being very active as this condition can really limit what you can do. Keep your heads up and thanks for fighting for a good cause🙂

  12. I came across this page by Googling “little holes in skin that itch” and the picture you posted of the four holes came up. I have the exact same holes in the inside of my elbows and knees. However, I have been diagnosed with Scabies and I assume these holes are the burrows causes by the mites. I have also had a history of eczema and have used many steroids. To treat Scabies I have used Ivermectin and Permethrin but neither have worked for me. I’m beginning to wonder if I’ve been diagnosed wrong. I’m only posting here because the holes in my skin look EXACTLY like those in your picture. I’m wondering what you’re input is. Thank you.

    • hi shannon, i’m sorry i can’t give you any medical advices! is there any way you can get yourself tested for scabies? mine are actually vesicles, or little blisters that form under the skin for whatever reason it might be.. as for you, i am really not sure and i don’t think i’m in the correct position to give you an answer on that!

      however if you have used steroids for prolonged period of time, it could be your “worsening eczema” as dermatologist would call it..

  13. I’m going thru the same thing I used elocon cream and I’m left with dry skin I have rashes every where apart from my face but I can see the redness around my eyes

  14. Hi there.
    WOW it feels so great to know Im not alone!!!
    Ive used them for 10+ yrs and Ive tryed to stop using them before. But my face would get so bad I thought I needed the creams. untill I googled around a bit and found all your posts. And I just feel so happy that im not alone on this journey, and coming back on here every couple days hearing everyones storys helps me keep going!
    Thanks everyone
    One of the best natural brand creams ive used and I honestly think is a mircle cream is Carolinas Cream, but its only avalable online or at some chemists here in Australia, my face has been dry, and tight but with carolinas cream its been amazing! and its not greasy like vasoline, or coconut oil (which I still use every now and then)
    But ive never looked back from using the cream its amzing, and ive never looked back and wanted to use steroids again!!

  15. Hi, your blog is really helpful. I feel lucky that i have discovered i have TSW early in life my ,18, and had been using topicalsteroids for 3 yrs. My symptoms are only on my face and scalp and gets worse in cycles where the condition looks very similar to yours. I just wanted to say that i have noticed that for me eating chocolate triggers the oozing and redness that occurs over night, and stopping eating it has helped a lot…although sometimes i don’t know if its worth it😛

    • hi there! i’m glad that my blog is of use to you. good thing you’ve identified your TSA problem, not many people are willing to accept that! that’s your first step to complete healing🙂 3 years isn’t a very long time in my opinion, i believe you’ll heal up in no time!

      as for chocolates, i think i’ve read somewhere that it’s an histamine releasing food (not too sure if my memory is correct or not, you can do the googling..!), so it might trigger an allergic like reaction. i suppose you can always avoid chocolate for now, you can reintroduce them into your diet after you’ve healed! it’s just chocolate anyway, other than it tasting heavenly.. there’s not much of a nutritional value in it. hope that makes you feel better in someway..😛

  16. Ah alright cool yeah, i was actually wondering whether i could reintroduce certain foods so thanks! Its only been one months withdrawal and i’ve thought that felt long until reading about yours. I am at university so i also understand how hard it is to keep up with work, just like i have read on some comments here

    • i BELIEVE you can reintroduce them back into your diet (as long as you are not allergic to it naturally. can’t take what’s happening right now as the standard of reference because our body is hypersensitive during the TSW stage. i guess it’s a case of raging immune cells?).

      if things get out of hand, you can consider applying for a year off from school! i did that and i think i made the right decision. good thing about being in the university is that i can be away for 1 year and it won’t matter.🙂

      good luck!

  17. Hi. I have a question for you. I don’t use steroid creams very often at all. I have had eczema since I was 7 and my story is very similar to yours. In the past two years it’s gotten increasingly worse and spread to my abdomen, arms, legs..etc. I was wondering if there is steroid withdrawal from just the medication, prednisone. I know it comes back after taking it and people are weened off of it but does taking the prednisone make it come back worse also? I was just curious of your opinion because I don’t use the steroid creams much at all and won’t be from now on after reading your blog.

    Thanks for the help.

    • hi wendy, i assume you are taking oral prednisone? since i’m not actually a doctor, please take what i say with a pinch of salt. i believe it might be steroid withdrawal, after all you have been suppressing your immune system with the oral steroids all these years. once you stop, they are bound to have a rebound action (it becomes worse than before). however, since you didn’t use much topical steroids, i THINK your skin structure might be better than what we TSW patients have, since topical steroids are known to damage the skin. so to answer your question, yes, i think there is steroid withdrawal from oral prednisone. in fact, that is a pretty well known thing, that is why people taper off the dosage when they are about to stop it. but they don’t know that even if you taper it, the rebound will still occur because what you were suppressing are now able to break loose again.

      it’s a really smart choice to stop using steroid creams🙂 get well soon, and god bless!

  18. Hi there,

    Came across your informative site while I was googling about the symptoms that I am currently experiencing and I still cant believe what I had.😦 You are surely an inspiration to my road of recovery. I was first introduced to topical steroid cream (Betamethasone Valerate) approx 1 year ago. I do not have ezcema, and was given the cream mainy to apply on my face as I was having allergy reaction to a particular facial product. However, for the past 4 months, I have been using the cream more and more often (Once to Twice a day) until I realized that the cream has no more effect on me. I googled abit and decided to stop hastenly, for about 11 days now. Anyway i can tell which is the peak of my symptoms? I am feeling so distressed!😦

    I currently experiencing redness, burning sensation, dryness, itchiness, some flaky on my eyelid and nose, abit of small pus-filled pimples looking thing on my face and jaw. I am using extra virgin olive oil to help with the dryness and when it’s not so dry, the itchiness is bearable. Could you advice if this will spread to whole body? (I seriously pray that it will not). I have also obtained a tub of the vaseline, and wonder if i can apply it on my face now and how many times can i apply in a day? What did you use to wash your face?

    I am in dilemma and was toying with the idea of visiting a derm tomorrow. I havent seen one for awhile and wonder how much advice or help they can offer. Will going for facial helps alittle too? Please please hope to hear from you soon. Thank you!

    • hi! i can understand the distress you’re going through right now. since i am a heavy steroid user who used steroids all over my body for many more years than you, i can only say your symptoms will be milder than mine and your recovery will be much faster. no guarantee on whether it will or will not spread to the rest of your body, i surely hope not!

      regarding vaseline, you can feel free to use it as long as it doesn’t irritate your skin. in the early days, it irritated mine. i only started using vaseline after several months as it no longer irritate my skin. it is good to note that the skin is extra sensitive during the start of steroid withdrawal. back then i did not use anything to wash my face with. it’s just plain water. i never used soap anyway, because i was told by the derms that i have dry skin and should avoid soap.

      well, you can always visit the derm if that makes you feel better. but i can already tell you what your derm is going to say.. he’s probably going to tell you that you’re having a worsening case of eczema/allergy, and he will give you a stronger steroid to apply. you decide if you want to slap on more steroids. i’ve been to the skin centre for 8 years and this is what i get, ALL THE FREAKING TIME. my advise to you is to not waste your money and time with the derms. if you really want some assurance, you can visit this doc called dr sarani. she’s from Healthpoint Family Clinic & Surgery, 48 Tanglin Halt Rd.

      i really don’t advise facial at this stage, i can assure you it doesn’t help, and might even make your irritation worse.

      sorry but i have to be really straight with you. you have to prepare yourself if you really want to stop using steroids. the derms didn’t tell us that we have to apply steroids for life. coming off it is like coming off drugs, it’s gonna be bad and tough.. but it’ll be good eventually.

      good luck to you, and god bless!

      • Hi,

        Thank you for your reply. Noted about your helpful info on the use of vaseline as well as facial. I have applied them for the first time tonight and so far so good.

        On hindsight, do you think if what i have is something called steroid induced rosacea dermatitis? I know you are not a physician but i was researching the whole afternoon today and found my symptoms matches this condition as well.😦

      • hello! you’re most welcome🙂 i’m happy to connect with people via my blog this way. it’s great to know that vaseline doesn’t irritate you!

        HMM, it could be steroid induced rosacea if you match the symptoms that way. which is sort of in line with TSW isn’t it? it’s both caused by excessive use of steroids. i know you’re trying desperately to find out what’s wrong with yourself, but please don’t be so hard on yourself.. i felt that way back then when my skin started turning for the worst despite being with the derms. i thought i had so much poison in my body that needs to be purged via my skin. haha!

        anyway, i really think you’ll recover soon, but you have to bear with the redness and irritation for a while. the skin takes a while to regenerate and heal. if ice packs make you feel better, please do so. if make up doesn’t irritate your skin, please conceal whatever that makes you uncomfortable so that you can still go to work as per normal.

        please don’t think for a moment that you’re troubling by asking me all these questions. i wish i had someone to bombard questions to back then.🙂 i understand.

        xoxo

  19. Hello,
    Thank you so much for sharing your story of steroid cream withdrawal. It is inspiring and I am sure that it will help lots of people. I too have been on the same journey and I have come out the other side with healthy skin. I also wrote a blog to document how I withdrew successfully and I would love for other sufferes to see that it can be done. With love to you and congratulations x Holly x http://lotusgirlskin.blogspot.co.uk/

    • hi holly, thanks for the comment🙂 i’m glad that you’ve ended your journey with TSW! i went to your blog but can’t see any entries.. i hope others get to read your experience and be motivated too..!

      xoxo

  20. Hi, Just wondering if you have a list of blood work tests someone should have when starting withdrawal from cortisone? Is it really necessary? Should you have these tests before you start, and during the withdrawal as well? How often? Thanks!

    • hi gwen, i don’t really understand what you mean by blood work tests, can you be more specific?

      i guess i didn’t have any blood work tests, other than a blood allergy test i done before i stopped steroids.

  21. Hi, I stumbled upon your blog today and feel amazement, fear, and relief all at once. Thank you for sharing your journey especially the before and after photos. They are shocking !

    I was on topical,steroid on and off for just over a year.. Started with a red patch on red neck, then spread to whole neck. Now I have red chest and shoulders. I look like I had red paint pouring down from my neck then it dried out at my shoulders and chest. Is this a spreading of TSW? I also have red patches with very visible borders on my arms and some small red bumps in circular patches on my feet. My question is, they all look like different types of rashes. Could they all be from TSW ? Before all this, my skin was smooth and milky. Now I yearn to just be able to wear short sleeves.

    I itch all over and coconut oil applied every 2 hours is the only thing that’s helping me right now.

    Please let me know if what I have sounds like TSW.

    Thank you so much!

    • hi ann, seeing your symptoms, it reminds me of my worsening eczema. i can’t say for sure that this IS the TSW, but i can more or less be certain that the worsening eczema is caused by steroid addiction. if you stop using steroids now, you will have a rebound that will be much worse than what you are going through right now, that will be the TSW. i suppose you’re still in the addiction phase, which is why you have spreading rashes. mine worked just like yours too, from the initial rash they slowly grew and expanded, even claimed new territory on places that never had problems before.

      the circular patches are called “nummular eczema”, basically it just means it’s a circular rash with defined perimeter. i had those while i was still on steroids. they just keep spreading to new places.

      if the coconut oil helps you, please keep it up. do whatever that makes you comfortable. it would be best to stop using steroids but you have to be prepared for the withdrawal.

      good luck! do visit the itsan forum, they’re very helpful and supportive.🙂

      xoxo

      • I looked up nummular eczema and it does look like what I have. Thank you! Sort of ironic to read that the cure for nummular is topical steroid. I have lost a lot of weight and hair and read that you have gone through the same. When did you gain it back And how? Looking at your pictures gives me so much hope. You look wonderful and I hope you will complete your journey soon. Thanks for answering my questions…

      • well, the “cure” to all forms of dermatitis is steroids, that’s what the dermatologist led us to believe.

        regarding hair and weight… i’m not sure when did my hair start to grow back, it’s very gradual so i can hardly notice the change. my weight however.. i suddenly got back to my original weight around my 21st month. then i even got heavier than i used to be.😛 i’m not sure what you mean by “how” i gained back my hair, it’s all the body’s doing and i have no control over it!

        you’re most welcome, glad to be able to answer your questions.

  22. Hi,
    I’m also suffered eczema and I had stopped steroid for 10 months but right now it’s going to cure soon. I also went to NSC before and they told me the same thing as what you said. Can I ask whether do you still allergy to seafood or whatever like alcohol after you cure your eczema?

    • hello mario! i’m glad that you stopped using steroids! and it’s good news that you’re healing soon!!!! well, i can’t say my eczema is cured yet, i still have a little bit on me that hasn’t left completely yet. i have not tried seafood because i’m scared to break out in hives (which i did in the past), however i can tolerate alcohol. not too much though, because after all it’s still an histamine releasing food. i do get a few spots of hives after drinking too much alcohol.

  23. Juiliana, First you are a true inspiration to all of us that are suffering with eczema. You are truly a beautiful girl! I had withdrew from steroids a few years ago and foolishly restarted them a little while ago but used it for only a week straight just because I had a small red patch of eczema I was trying to clear for an event. Anyways, that alone cause a rebound effect and now it has spread to a good portion of my face! I am powering through it with the hopes it will clear on its own. Gosh, it’s really hard. I know that there are so many worse things that one can go through but this still makes it hard for me.

    I am still exploring your blog and going through the all the information/posts but my question is when your face was so dry and peeling (I know how much pain this is) what did you use on it? Anything? I am in desperate need of some advice because my face is so raw.

    You blog is inspirational and I am so glad I found it! Thank you so much
    Sonia

    • hello sonia! thanks for giving me the heads up😀 appreciate that. you’re lucky you only used steroids for a week, things will definitely clear on its own. give it a week or two at the very least?

      when my face was dry and peeling.. hmm, i wash my face with water so that it soaks up some moisture, then i either slather on a salve or vaseline. something oily basically, as long as it doesn’t irritate my skin. if it does, i’ll just let dry.😦

  24. Hi
    I have been suffering with chronic flare ups for months now and found these posts very interesting.
    I have used hydrocortizone for years, and some creams alot stronger on rare occassions, but have not used any for last 2 to 3 months. I wonder if its the TSW????
    Does Protopic count as a steroid? I just had to use some on my neck, sssssssoooooo sore and itchy i cannot function.

    • hi lacy, based on your steroid usage alone it does sound like you’re suffering from steroid rebound right now. i think steroid rebound sounds more friendly than TSW because the latter sounds like a death sentence.

      protopic does not count as a steroid, it has a different mechanism as steroids.

      sorry to hear about your plight. lucky for you, hydrocortizone is a weak steroid so your skin might not be as damaged as mine, meaning.. you’ll heal faster!

  25. Hi ,
    I have been using betnovate n from the past 10 years only on my face. i have been diagnosed with rosacea, steroid induced rosacea .I am in a process of weaning off my steroids. my face burns like hell.pls guide

    • hi disha, i think the best option for you right now is to use ice packs to make your face feel better. you can visit the itsan forum to look for others who had similar experience (steroid induced rosacea) as you and see what methods they used to relieve their symptoms?

  26. Juliana – hv read abt your journey and got a lot of inspiration. Abt myself I am a 46 yr old male suffering from atopic.-dermititis for last 15 yrs and hv been on steroids(prednisone, methotrexate) for similar period. HIV applied locally almost all available creams. I hv an extremely dry skin by birth and that makes matter worse,.. recently ( abt 5 weeks ago) I decided to stop taking orally any steroids and also stopped applying and steroid creams. Since then life has become a nightmare with eruptions all over my body specially my face which is now swollen ans oozing. Simultaneously I hv started on a ayurvedic medicines . I am determined not to take or apply the steroids again ijn my life. will keep this grp posted on developments.

    • hi girdhar, i’m glad i’m able to inspire you to stop using steroids! i hope you have medical supervision because you were on oral steroids which will impact your adrenal systems if you stop them unsupervised!

      i strongly advise you to visit the itsan forum because there are more people there to respond to your situation. you can also get more support there!

      good luck and stay strong!

  27. Hi Juliana – People have described you as inspirational and I guess there is truth in their statement. I do believe it takes a lot of courage to do what you have done and so I have started my journey on TSW with hope I have gained from your story and the story of many others on the web. I’m hoping that you can assist me with contact details of any dermatologists that you can recommend in Singapore. I have been off steroids for 6 months now and my symptoms have been severe and continue to be severe. I’m from the UK and currently work in Malaysia but often visit Singapore. I just need someone to over look my case to ensure I’m not getting skin infections or depleted of any vitamins or minerals in my body. I would be grateful for your assistance. Thanks. Shan

    • hi shan,

      thank you for giving me the heads up! i’m sorry to hear about your situation!
      i have yet to see a dermatologist who actually supports the idea of TSA and TSW, but there is GP i have met who agrees the danger of using topical steroids excessively. however she wasn’t so supportive of me going through TSW back then.

      i hope she has changed her mind since then because i have met her after i have healed and she is glad for me.
      her name is dr sarani, and she works in healthpoint family clinic at tanglin halt.

      i believe this is the address:
      48 Tanglin Halt Rd
      #01-337
      Singapore 142048

      i hope she will be able to help you!

      take care and good luck!

  28. Thank you so much for sharing your story. May I ask, how long do you believe it took for your skin to start thickening up and returning to normal (assuming you experienced some steroid atrophy)? Is there anything you can do or eat to speed up the process? Are there certain things that should be avoided. Thanks so much for your time!

    • hi mike! you are most welcome!

      I can’t say for sure when did my skin start to thicken up, because my skin felt so thick during withdrawals, all that happened was the skin “thinning” back to more normal skin. as for now, 3 years I to withdrawals I don’t know if my skin is normal yet or not. I feel that it is thinner than usual but I can’t be sure.

      there may be foods that can speed up the healing process, but I don’t think my diet helped me heal any faster. avoiding known allergens might make things easier to deal with though. the only thing you want to avoid is steroids I believe! all the other things are dependent on you!

  29. I have itchy skin, like little pimples,on my back, and some on arms, when i use betamethasone,it is more itchy, so use this steroid,on newer bumps,but if i put this steroid on my back, it is irritable.so i use eveeno oil on my back , and it takes itchy away, and use this twice a day, but is taking a long time in clearing up, have not gone to a skin specialist yet,next step, also take oral pill, called Hydroxyzine 25 mg. for 15 days . Have tried other Antihistmains which don’t work. pat.

    • hi pat, i wonder if there is anything i can help you with? if the antihistamine doesn’t work, then it just means that your itch is not caused by an allergic reaction. and what are those pimples to begin with? it may not even be an inflammation problem that would necessitate the use of toipcal steroids..! if they don’t go away, maybe the steroids isn’t treating them at all?

  30. hi juliana, i just read through many of your entries. So many emotional events you went through, I am going through them right now. Things like rejecting your friends hanging out, their visits, explaining skin condition to people close and not close and many many more. I was actually tearing up a little while reading because I’ve finally found someone who is able to relate to me. I even though of moving out of singapore as i only started my eczema around pri school. I didn’t have skin issues back in Taiwan. I am truly motivated and will look forward to being able to wear shorts/short skits/ dresses! Continue to look pretty Juliana!

    • thanks so much chia ling for your nice words🙂 i’m glad you can relate to these feelings! just so you know, you’re not alone! and you will be able to dress in clothes that will show off your skin in time to come. stay strong!

      xoxo

  31. I am still dealing with the side effects of using steroid cream on my face (basically my entire cheeks). The area where i used it is still dry and red but the flare ups have finally tapered off (unless I start rubbing the dry flaky skin, then i look like a red tomato ). I used a class 2 steroid on my face for about a month , i didn’t know it was a steroid cream since it had an anti-fungal ingredient (nystatin + triamcinolone acetonide). I still get these weird purple dots and craters, but they usually go away on its own. I am annoyed by comments by people saying how dry my skin is. Well no duh, lets see your face after a month of using the steroid cream i used. Nice blog by the way.
    Oh and i just want to say, the only cure for topical steroid withdrawal is cessation. I dont use anything on my skin. i dont even like taking a shower because it dries out my skin worse (the soapy water). the best therapy is drinking plenty of water, and move to a warm humid climate if possible (tropical is best). your skin will thank you.

    • hey josh,

      not sure if you’re targeting your comments to me or other readers! but i’ve already stopped steroids for 3 years and counting! and you’re right, stopping steroids is the only way to heal!

      you think the warm humid weather is better for TSW skin? i’ve been wondering the same thing lately and now that you mention, i wonder how you came to this conclusion.

      i hope the skin on your cheeks with strengthen with time.

      good luck!

  32. Hey I have been going through the same thing, and been using TS since high school, off and on about 10 years. My case is not as severe as yours but I feel like I have a milder case localized to my face:/. My skin get itchy right if I use any moisturize(even natural ones), so I am wondering if you tried something very simple like coconut oil or just let it peel for awhile? Also do you avoid the sun? Wear hat outside?

    Take Care

    • sorry to hear about it, christian. i’ve actually tried coconut oil, but i learnt that when the skin is sensitive (especially after coming off steroids), it will react to ANYTHING. even water or air. so i just let it be. listen to your body! i did avoid the sun as i was deathly afraid of getting skin cancer due to my compromised skin. i just walked around with my head facing the ground all the time. :X

  33. Hi Juliana! My sister forwarded me your blog– both she and I have had ‘severe eczema’ since we were born it seems. We’re now 27 and 29yo. Both of us would use steroid creams during flare ups. For me it wasn’t until last year I decided to get serious about clearing up and first thing my Derm got me was a strong Steroid Cream to use periodically. My skin would get HORRIBLE during my ‘off steroid’ periods… it never occurred to me it could be the beginnings of TSW.

    Geez– early last year I already started a path of getting healthier, working out, eating better, natural lotions etc… it DIDN’T make sense I was putting such an unnatural product on my skin. In a week I’m supposed to be back on my steroid cream… I’m planning on ditching it.

    Thanks to your site (and similar ones) I’m feeling totally inspired that my sister and I aren’t the only ones with messed up skin. I’ve started a new page on my own blog to chronicle my own journey. I’m sure I’ll be referring to your page many times.
    PyraDannyExperiences.com

    • hey there pyra (or danny?), sorry to hear about your situation! a lot of us went down the topical steroid route unknowingly.😦 but i’m really glad you found the answer today! it’s never too late to start going off steroids, but be prepared for tough times ahead. it will be hell. you and your sister will grow a much stronger bond after this episode i swear, because i can feel the connection between skin friends too!

      stay strong!

  34. Hi Juliana,

    Was directed here from a friend. I am also suffering from atpoic eczema, and I only recently learnt of steroid withdrawal. I have been off steroids for about 1 and a half years.

    I would like to ask, how do I know if my current skin condition is a steroid withdrawal, or just a regular eczema flare up? Because the symptoms for both seem very similar.

    Thank you!

    • hey james, you’re right, the symptoms for both are very similar, perhaps that’s why derms do not recognize TSA/TSW as a side effect from steroid overuse. the only sure way to know is that TSW will heal over time, but eczema will not if you do not treat the underlying cause.

  35. Hi Juliana, thanks for sharing your story. I have been suffering with eczema for nearly 23 years and only just heard of steroid induced eczema and topical steroid withdrawal 4 days ago. I have been using topical steroids since I was 2 and I started using oral steroids 2 years ago and since then my eczema has spread all over my body including my face. I have had similar experiences with doctors and dermatologists in Australia telling me that there is no cure for my eczema and I just have to keep using steroids to manage my condition. Flare ups happened more often and I would need to use stronger steroids to the point that only oral steroids worked. I’ve tried light therapy treatment and immunosuppressive medication but none of it worked. I am currently going through immunotherapy to treat my allergies – I am allergic to dust mites, mould , cat and dog fur.
    I decided to stop using steroids when I heard about red skin syndrome from my friend who is also battling steroid induced eczema. i am currently on day 4 of topical steroid withdrawal and my flare up is almost unbearable. Can you please give me some advice on what I can do to relieve my skin without steroids?
    Thank you

    • hello vanessa, sorry to hear about your situation!😦

      the western doctors will always believe that there is no cure for eczema because they can’t even pin point the main cause of eczema. the fact is, eczema is merely a symptom of bad health, but there can be so many different state and causes of bad health. you can’t cure bad health! haha!

      if your flare up is really unbearable, your doctor may agree to prescribe you with ciclosporine (cyclosporine?), it’s a NSAID and can lessen the severity of the initial withdrawal. other than that, i heard that sea salt bath eases the skin too. dr rap suggest cold compress, but i find it very uncomfortable personally.

      • Hi Juliana, thanks for your reply🙂

        I felt that the prolonged use of topical steroids have caused my immune system to become very low. Over the past year i have had several health issues such as fungal infections, warts on my foot and UTI. Do you think these might be caused by the prolonged use of steroids? Or the side effect of using steroids?

        Is Cyclosporine an oral medication? I am taking antihistamines to help me sleep at night at the moment but i don’t know if i should continue using it as they only work some times. I have been taking salt baths with apple cider vinegar. They do help with the burning sensation but does it dry out my skin?

        I have to sleep with a humidifier on at night as the air in Australia is very dry especially in Winter. I am originally from Singapore. I moved to Australia when i was 13. I was free from eczema throughout high school but it came back when i was 18 and have been worsening since then. And as you can imagine, i had to use more potent steroids over time and last year, resorted to Prednisolone.

        I am on day 14 of TSW and my skin looks worse than it has been in about a year. But i have also noticed that it looks different from my previous flares. It is very red and i can see small rough bumps on my skin. It used to be just smooth red patches. Did you have the same experience? I also experience tightness of my skin especially on my face and around my eyes. My jaw line and neck is also very flaky and extremely dry.

        I am currently using Cetaphil for my cleanser and moisturizer and Vaseline too for the extra dry areas. Is there anything else you would recommend?

        Sorry for the long post.

        Thanks🙂

      • hello vanessa!

        since steroids suppress the immune system, and assuming there’s a significant amount that’s being absorbed into the skin when we use topical steroids, it may exacerbate any suppressed immune system. it could be the prolonged use of steroids, it can also be that your immune system was weak to begin with, hence it got even worse after being exposed to topical steroids.

        cyclosporine is an oral medication, but it can also be in cream form. i do not know if salt bath with ACV will dry out your skin, it’s a personal experience so it’s best if you try it out for yourself.

        regarding small rough bumps, during the initial flare my skin had those for a few days before it turned into raised red skin. the tightness is very normal during withdrawals, it’s uncomfortable.. i hope you’ll stay strong and bear with it!

        cetaphil and vaseline are both pretty good moisturizers, my only recommendation is to listen to your body. if it hurts you, stop applying it for a while. there were times when my skin was too irritated, it couldn’t even tolerate creams i’ve been using for years, i even react to natural oils. during those times, it’s best to just stop everything even though that means being super dry and uncomfortable for a while.

        it’ll pass! have faith, and don’t stop believing.
        good luck!

  36. Good evening,Juliana.
    I wrote to you last year in the midst of TSW around September . I would like to thank you very much. Sine then, I am getting better and better each day. I was an on and off user for about 20 years. TSW was really harsh but it must be done. No other methods except cold turkey. Thank you so much for the motivation.

    • hi lorna, i think i remember your email back then! i’m glad to hear you’re getting better each day! once the body is done with expelling the years of junk it has accumulated, you should be experiencing observable healing very rapidly. keep it going!🙂

  37. I have had severe excema for as long as I can remember but it was just on my legs now it’s everywhere red raw infected and oozing I have tried all the steriod creams available and I have been taking cyclosporine. Amitriptaline. Antihistamines since January but I’m no better infact worse I can’t sleep and when I do I toss and turn .sweat and wake up cold damp and sheets are like sand with skin. I can’t use moisturiser as everyone I’ve tried stings burns and leaves me damp clammy cold and wanting to tear into myself .
    Blood tests have proved I’m allergic to dogs dander and housemite amongst other things grass pollen trees horses but no food allergies
    I have had dogs in my home for 20 yrs lived with them worked with them and love them as part of family I am at breaking point and would appreciate any input you could give me.

    • hey nicky, you probably already realize that steroids are no longer helping you suppress your symptoms. and you also probably know your next best option is to stop using steroids while continuing the cyclosporine if the symptoms are really unbearable. i would however suggest going cold turkey on all medications because stopping the water flow by installing a dam is only going to build up pressure over time.

      if moisturizers irritate you, stop using them. listen to your body.

      as for sleep, it is almost non existent during withdrawals, but it will get better with time. your skin is in a super sensitive state currently, you might want to consider staying away from your dogs for the moment. once your skin recovers, you should be able to live with them just fine.

  38. I have stopped all medication and creams /steroids since the weekend I have found coconut oil to provide short term relief and I plaster it all over my body as much as I can during the day. I am also trying to cope with just one coffee a day instead of 4/5 and drinking as much water as I can I’m just wondering if there is anything else I can do to ease my pain and discomfort as I am very weak and emotional at the minute .
    Your an inspiration to everyone and I hope more and more people read this and are strong enough to move away from drugs.

  39. Am currently experiencing the steroid withdrawal symptom this is like d 3rd week, I can notice little improvement but it’s not fast enough for me but am happy the dryness especially areas around my eyes have reduced although I still have the rash some days it better some days it feels worse. Am really happy to find ur blog now I know am not alone. Thank you u r doing an awesome job. Am black, Nigerian by birth and the cream I was using is called epiderm, used it for about 1yr

  40. Hi Juliana.
    I’m currently…I want to say like 2 months…2.5 months into TSW (I think I stopped mid/end of August 2015) and I just wanted to thank you for posting your story and keeping your blog updated.
    I’ve been reading as much as I can to help me through it.
    I don’t think my symptoms are as bad (no offence) but I feel so…disabled because of it.
    Reading your blog has given me hope and lifted my spirits a little so I wanted to thank you so much for that.

    I think the worst part for me is…feeling itchy or feeling my face peel in public (it’s only on my face and neck luckily…hopefully it doesn’t appear in other parts). This entire ordeal has really hindered my self-esteem but I’m hoping one day it’ll be over so I can live my life again. I hate missing out, I haven’t looked in the mirror since I started TSW, I know my eyebrows are pretty much gone after I caught my reflection in my laptop one morning, I’ve just given up so much. I miss my friends, feel like I’m missing out on so much but I’m trying…

    Anyway, I will continue to read your blog for support and pray my journey will one day be over.
    Again thank you for sharing your journey!

    • thanks for your comment! i’m glad to be able to help you during this period of time.

      your self esteem will be affected, but trust me you’ll heal eventually.🙂 you’ll be back to your self, and probably stronger than before too. i avoided mirrors a lot last time as well. no point seeing the monster in the reflection!

      stay strong!!

  41. Hi julianna
    Thanks for sharing ur story now I feel relieved till today I thought I was the only one who is addicted to these steroids. Now I know there are so many friends like me. Coming to my story I have been using these steroid namely mometasone fourate(0.1%) for over two years on my face. For the first 6-8 months I was very happy as it was giving better results later I stopped using it from then my face started to flare up then I again started using it my face became normal. Now it has become a cyclic process. Could u tell me what u have done to avoid steroids.

    • hey ranjith,

      i’m so sorry to hear! mometasone was the one i used on my face as well, i think it dealt the most damage. the only thing i’ve done to avoid steroids is to stop using it altogether.

  42. wow..Juliana. I am amazed by your journey. I just my eczema and psoriatic skin last 2 years. like you i was using steroid cream like a moisturiese or itch relief. and the patches spread more and more..I stopped when a friend with eczema told me there is such thing call addcition. And now i am going cold turkey..depending on coconut oil. I would like to know how do you overcome the intense itch? Did u use any anti itch remedy?

    Thanks..looking forward to your reply soon.

    God bless you
    Julie

    • hi julie,

      sadly, i can’t offer you any relief or remedy for itch. i was scratching pretty much all the time. i heard cold compress helps but i hated the cold..😦 gently caressing your skin might help soothe the itches! just try not to dig your nails in and scratch!

  43. Why would you want to use steroid creams all the time? It the long run they will ruin your skin! I also suffered from rosacea for many years – nose and forehead area….i used EVERY steroid cream, and while they sometimes worked, they also left me with burning and they stopped working after a while. I recommend you switch to more natural and gentle products. I currently only use natural stuff. I still have yet to find a face cleanser I reocmmend (they are all harsh for me), but as a moisturizer, the Somaluxe Redness Repair is what I use. It does really calm my skin – especially if my rosacea gets worse – I apply that twice a day, and in 24 hours the redness is gone.

    • i didn’t know better last time, that’s why i used too much of them. i’m glad the steroids left you burning because that actually made you stop applying it any longer! thanks for your recommendation though🙂

  44. I was also using steroid cream and what happened in next few days my face got red and sometimes pink finally I went to doctor for check up and he said not to use that. So I stopped suddenly and that remained same pink and red and my face looked horrible like I used to do make up on my face but it was not. I feel like itchiness that was so terrible, I felt so depressed. People looked at me and laughed in my back.
    I don’t know how to avoid this, but I must say steroid cream like drugs it’s really difficult to leave it suddenly. So my doctor prescribed me that I should use steroid + non steroid cream both to avoid that problem. Still I have some problems in my face I wish I will get soon as possible as much.

  45. Hello, my 5 year old daughter has always had severe eczema on her knees and elbows so in November 2015 we agreed on a week round of prednisone that triggered full body eczema and shedding and a chain reaction of bacterial and staph infections. It triggered shedding of her skin and the neck, face and arms have been shedding for months now off and on. Is it possible that it is because of the oral steroids? She doesn’t seem to have eczema on her face and neck (no rash or redness) yet her entire body still has a redness/rash (maybe I just can’t tell as it’s one rash). Children’s Hospital just keeps giving more steroids but the shedding doesn’t stop. Are there any hospitals/Doctors that know how to help with this condition? This hospital doesn’t know what to say or do … They are suggesting to do genetic testing. It’s been the worst 10 weeks of our lives and need some hope.

    • hello, from my knowledge, a short course of oral steroids might result in a rebound reaction. i think you should consult dr rapaport since he has many experience in this field!

  46. Thank you for telling your story!! What an amazing change to see that you were courageous enough to get off the damn steroids and make it through to the end. I’m going through this horrible withdrawal right now (though it doesn’t seem like it’s as bad as yours was), and the face is a horrible shedding mask of skin of some days, and red and inflammed and oozing on other days. *sigh* So far, I don’t have it all over my face like you did so I’m hoping I can go back to work soon.

  47. Hi Julianna,
    Thank you for sharing! I’m reading as much as I can about TSW as I believe I am going through it now. I only used topical steroid for about 5 months on my face but I have bright red dry patches all over my face since I stopped using the hydrocortisone. My eczema stared with a small spot on my temple, then on my forehead then spread all over my face. Around February it was as though the hydrocortisone wasnt helping so I stopped it all together last week. It has been hard. Uncomfortable but I am so self conscious. I am dying to know how long it will take to heal. Thank you.

    • hey! lucky for you, you only used it for 5 months, and it’s the weakest strength steroid there is! TSW should be fast for you, but you still have to address your underlying eczema! and that might take a while!

  48. Juliana, you started using steroids at 14 and stopped in 2011 at age 22, is this correct? So in total you used them constantly for about 8 years. I really hope you are nearing a complete recovery. I also read in your recent update that you’ve had symptoms again on your hands, but you don’t believe it is related to the TSW. What do you think has caused it?

    • yes you are right! thank you for your well wishes! i think it’s my underlying eczema, but it developed into red skin symptoms again, i think it has got something to do with my adrenal glands because things started going downhill after a traumatic accident in 2014. i think the years of topical steroid use have made my adrenal glands prone to suppression.

  49. Hi Juliana

    I have eczema too and on and off using mometasone (normally once a week) when flare up. After flare up gone, will use Protopic (non-steroid). Can I slowly reduce it with this method? Use mometasone only when flare up and after that slowly reduce using in Protopic. Thanks.

    • hi there, i believe you can! if it works for you, keep doing it. over time you should be able to get off mometasone. but you have to consider getting off protopic in the long run as well because we all know that it isn’t a long term solution for eczema.

  50. I’m going through with TSW now for 10 days already, and my face is very tight and totally dehydrated. I’m having concerns that in a certain time of day my face turn extremely reddish , hot , itchy. Am I suppose to put moisturiser or anything u recommend for my situation? Thank you very much.

    • Please do what makes your skin feel better. If your skin can tolerate creams, you can use that to ease yourself through the day. If it irritates you, it’s best to not use anything. Even though the dryness might feel uncomfortable, it might feel better than constant itching and burning. Good luck!

  51. Great blog! So helpful. I am in Massachusetts, USA. Going through TSW. I looked at your photos – my feet are just now flaring like yours were and my right shoulder. My left hand/foot worse than right. Anyway – I’m 23 months starting August (tomorrow). Hoping month 24 is the end of it all.

    Your skin looks beautiful!!

    Thank you,
    Carolyn

  52. Hi ,

    I have used steroids as A whitening cream given by a skincare centre (india )for about 2 and half yrs. Been 7 months since i am off topical steroids . Skin now appears dull , rough and completely sunken (most worried about)in on face (atrophic ) do u think it will heal ,any natural remedy i can do . Also is it possible for atrophic skin to thicken and get back to normal ? Thanks a ton .!

  53. Hi, my name is Camilla and I’m about to go threw with withdrawal from topical steroids . I have been useing these creams all 26years of my life I was diagnosed with aptomic dermatitis when I wa 15years old . I’m extremely scared and anxious for my loooong journey ahead. I have been having clear ups since the birth of my first child as I choose to stop useing them because I didn’t want to get any on my new born little girl and thank god I did now looking at what it’s done to me since then I have deteriorated and gotten 10 X worse then Iv ever been in November Entire life!!! I didn’t know what was happing after 6 months I FINALY went to a doctor and yep they just sent me away with steroid creams , I would only use them spearingly and wouldn’t go near my baby until I was sure I wasn’t going to get any on her , then I would clear up and so id stop useing them. Then of course id flears up and they cycle begins this has gone on for nearly 2 years now this last year being the worst as its expensive to go to the doctors so I would go with out getting worse and going threw stages of what I was un a wear of my body detoxing this poisen out of my system . But of course it would be one unbearable I’d go ba l and get on a prescription of more creams and prednisone by this stage u was sick of this nothing was changing so I started to do my own reasurch and found that I am going threw a steroid withdrawal and am beside my self . It is disgusting that doctors don’t acknowledge nor know about this ?!!!!!!!! Now that I am extremely awear of what’s going on I will make a steroid free journey Any suggestions to make it more comfortable as my skin becomes dry , and sore?

    • hi camilla, i’m so sorry to hear about your situation! it was very wise of you to avoid getting any steroids onto your baby girl! most doctors still do not acknowledge steroid over use and withdrawal, but i believe they will in time to come.

      when my skin was dry and cracking up, i found that vaseline petroleum jelly was the only thing that didn’t irritate my skin. some have reported that natural oils work for them. it’s best for you to test them out first, because everyone reacts to different things. as for soreness, i can’t really offer any insights to that! perhaps you’ll find the ITSAN forum useful?

  54. Hi Juliana, I’m in my 8th month of TSW & I have this embarrassing problem at home of slapping my face because of it being so itchy.. I know it’s not normal but I can’t seem to stop it. Any suggestions? Thanks

    Sheri

  55. Good Evening Juliana,
    I came about your blog when I found out I was using steriod based cream. Blame me for being ignorant but I’ve always trusted my doctors since I was 9 years old, where I started my monthly appointed until I was about 21 years old. I had my eczeme when I was about 2 years old, started from my calf which lasted until I was around 15 years old. Yes, 13 LONG and painful years. Started out with elomet, I think.. and my doctors gave me different medication over the years but finally settling for the betamethosone cream.

    I got better, calf looking good. No more signs of eczema. But then it started to spread around my arms and hands when I stopped applying the cream. Medication start all over again until now, always keeping it beside my bed and carrying it everywhere just incase the area got bigger… and I’m already 25 years old. I even buy any cream that says bethamethasone when I left mine at home. FML…

    Reading your experinces over the years, and I thought I was the only ones cause no one understand anything I’ve been through. I’m thankful that you’re willing to share all this. I think I should start a proper diet but most importantly stop using this steriod based cream!!!

    • hello anees, i’m glad you found my blog! you might want to plan ahead if you want to stop using steroid creams, because your skin will get really bad for a while as it recovers. a proper diet that is nutrient dense might promote better overall health, so i definitely encourage you to take a look into that!

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