Photos

hand/wrist/shoulder:
topical steroid withdrawal, wrist, red skin, not eczema
9 may 2011

topical steroid withdrawal, wrist, red skin, not eczema
29 may 2011

topical steroid withdrawal, wrist, red skin, not eczema
8 june 2011

topical steroid withdrawal, finger cracked, skin split open, not eczema
11 june 2011

topical steroid withdrawal, wrist, red skin, not eczema
13 june 2011

topical steroid withdrawal, wrist, red skin, not eczema
16 june 2011

topical steroid withdrawal, wrist, red skin, not eczema
16 june 2011 (looked better)

topical steroid withdrawal, wrist, red skin, not eczema
21 june 2011 (very swollen)

topical steroid withdrawal, wrist, red skin, not eczema
3 july 2011

topical steroid withdrawal, wrist, red skin, not eczema
6 july 2011


6 july 2011 (seems like another small cycle has ended)

topical steroid withdrawal wrist  hand red skin not eczema
17 july 2011 (start of new cycle)

topical steroid withdrawal, wrist, red skin, not eczema
29 july 2011 (right wrist seems worse than left)


7 sept 2011 (left hand looks smoother)

topical steroid withdrawal hand rough elephant red skin not eczema
28 sept 2011 (left hand rashy and dry again)

topical steroid withdrawal wrist red skin not eczema
28 sept 2011 (right wrist still rashy)


28 sept 2011 (this is the vesiculation on my arm i was talking about. i didn’t even scratch it.)

topical steroid withdrawal cracked swollen wrist red skin not eczema
11 dec 2011

topical steroid withdrawal wrist rough and dry red skin not eczema
2 dec 2011

topical steroid withdrawal shoulder cracked and dry red skin not eczema rash
15 jan 2012 (this is my shoulder)

topical steroid withdrawal shoulder cracked and dry red skin not eczema rash
23 jan 2012

topical steroid withdrawal shoulder cracked and dry oozing yellow fluid red skin not eczema rash
29 feb 2012

topical steroid withdrawal shoulder cracked and dry red skin not eczema rash
19 mar 2012

topical steroid withdrawal shoulder cracked and dry red skin not eczema rash
9 jan 2013 shoulder looking good, but still dry and wrinkly. red sometimes.

topical steroid withdrawal crusted flaking wound elbow red skin not eczema rash
3 jan 2012 (this was my “bloody-wound” on my elbow)

topical steroid withdrawal crusted flaking wound elbow red skin not eczema rash
29 feb 2012

topical steroid withdrawal, swollen dry hand, deformed nails, red skin, not eczema
19 mar 2012 sausages.

topical steroid withdrawal crusted cracked swollen finger red skin not eczema rash
19 mar 2012 (oozing finger. sausage.)

topical steroid withdrawal cracked palm red skin not eczema rash
19 mar 2012 cracking palm.

topical steroid withdrawal hand leg dark red skin not eczema rash
21 dec 2012 borderline normal looking hands. it was still red and dry and crusty, but it can’t be seen from this photo because the iphone camera’s sensor isn’t as sensitive. but it’s not as swollen as before already!

topical steroid withdrawal healing hand red skin not eczema rash
14 jan 2013 my veins are starting to pop out of my skin once again. it means that my skin is getting back to its original thickness. nice to see you, veins..!

topical steroid withdrawal healing hand late stage red skin not eczema rash
17 jan 2013 the red patchy parts.

topical steroid withdrawal healing wrinkly wrist
17 jan 2013 wrist is improving too.

legs:
topical steroid withdrawal rashes on my feet looks like eczema
9 may 2011

spreading eczema rashes due to topical steroid withdrawal
9 may 2011

topical steroid withdrawal red skin syndrome feet
10 may 2011

spreading red patches, this is topical steroid withdrawal not eczema
10 may 2011

topical steroid withdrawal, feet rash flattening and spreading
27 may 2011 (notice the swelling of my ankle)

topical steroid withdrawal, swollen ankles
4 june 2011

topical steroid withdrawal, swollen feet
12 june 2011


15 june 2011


19 june 2011


22 june 2011


27 june 2011

topical steroid withdrawal, knee fold rash
7 july 2011


19 july 2011


30 july 2011

topical steroid withdrawal, feet
30 july 2011

topical steroid withdrawal, flaky, crusty and oozing ankles
21 sept 2011 (left ankle. slowly healing)


21 sept 2011 (right ankle. healing slower than left ankle, probably because it flared later than the left.)

topical steroid withdrawal, cracked and oozing feet
11 dec 2011

topical steroid withdrawal, yellow crust and oozing on my knee
29 feb 2012 (this was my knee. oozing and flaking and you know what..)

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19 mar 2012 (manifestation on my sole)

topical steroid withdrawal, red skin syndrome, feet
19 mar 2012 (my feet)

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21 dec 2012 (finally my legs are looking normal..! still having some sort of edema. no sexy legs yet.)

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8 feb 2013 (top of my feet looks normal too. still gets rashy here and there but it’s so much better.)

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jan 2013 feet is still improving.

face:
topical steroid withdrawal, red skin syndrome
9 may 2011 (approximately 1 month after cessation)


2 june 2011


12 june 2011

topical steroid withdrawal, dry flaky skin, face
14 june 2011


16 june 2011


18 june 2011


22 june 2011


27 june 2011


17 july 2011

topical steroid withdrawal, red skin syndrome, red and dry neck
31 july 2011 (starting of a new cycle)


3 aug 2011 (woke up with exudate)

topical steroid withdrawal, dry and flaking face, around the lips
6 aug 2011 (skin hardened)


11 aug 2011
cheeks are changing skin. the parts above and below lips are oozing.


13 aug 2011


26 aug 2011


9 sept 2011 (face got patchy)


21 sept 2011 (rashy face. red and tender after peeling.)

topical steroid withdrawal, red flaky face, eyes, not eczema
28 sept 2011 (eyes are rashy too.)


10 october 2011 (face been red like this for about 3 weeks)
CLICK ON PHOTO TO ENLARGE


29 october 2011 (face is drying up, flaking, oozing, dried crust, whatsnot)
CLICK ON PHOTO TO ENLARGE

topical steroid withdrawal, red, oozing and flaking face
29 oct
CLICK ON PHOTO TO ENLARGE

topical steroid withdrawal, yellow flaky skin, face, not eczema
29 oct
CLICK ON PHOTO TO ENLARGE

topical steroid withdrawal, oozing red face, not eczema
20 nov
CLICK TO ENLARGE

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2 dec 2011

topical steroid withdrawal, yellow fluid oozing off my red and dry face, not eczema
2 dec 2011

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11 dec 2011

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10 jan 2012

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23 jan 2012

topical steroid withdrawal, red face, no eyebrow
3 feb 2012

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29 feb 2012

topical steroid withdrawal, yellow fluid oozing from face, not eczema
29 feb 2012

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19 mar 2012

topical steroid withdrawal, yellow fluid oozing from cheeks, no eyebrows
19 mar 2012

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14 apr 2012

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14 apr 2012

84 thoughts on “Photos

  1. Wow. I have discovered all about red skin syndrome and steroid withdrawal. I have this, too, and my skin looks EXACTLY like yours. Thank you for your blog and I will follow. To know that somebody out there is going through the same pain as I am means the world to me. We are not alone and we will heal. Thank you so much!!

  2. Hi! I’m so sorry you’re going through this – I understand completely, I stopped using steroids 8 weeks ago. I used mild steroids on my face (daily, sometimes twice a day) for 6 months before that, and went through 2 courses (of about 5 days) of prednisone, and have had 2 steroid injections. The first few weeks were incredibly difficult, and I still get terrible flare-ups now. I realize my face peels as well.

    I live in Singapore, and was wondering if you live here too? Would love some support during this time! Would love to ask you some questions as well!

    I’m hopeful we will heal🙂

  3. hi,
    my son, who is 27 has been using steroids for the past 17 years. It was not until he met his girlfriend that he has discovered red skin syndrome. With the help of his girlfriends mother, who is a respected naturalist, he his going through steroid withdrawal Yesturday was the first day that i have seen his since his withdrawl. To say the least, i was horrified by the way he looked, i felt guilty that i started him on the steroids all those years ago. I do not know how to support him, please can you help me help him. He is in his 50 day of withdraw. I feel so helpless what can i do?

    • hi lauwra, the least i can do to help you is to tell you that he will heal. it is a very tough journey, but he will heal eventually. i know it’s heart breaking to see your son suffer like this. it puts tears in my eyes everytime i see that look in my mother’s eyes.

      please don’t blame yourself for starting him on steroids. using steroids is not wrong. it’s the overuse that resulted in this. this danger of steroids is not well documented, neither did the dermatologist tell us about it.

      may i introduce you to visit our support group, maybe you can seek some solace over there?
      https://groups.google.com/forum/#!forum/cure-eczema-by-stopping-steroids

  4. I am looking through your blog and am now scared it might take me more than a year to heal myself. I was expecting around 6 months. I am 17 and took steroids on and off for 2 years. and than one year for just a month. and one time i was in the hospital and took some oral pill for 5 days for my swollen face.
    did you like slather on the steroids like it was moisturizer or something? i am just shocked sorry. because from your story it really seemed like u didnt use too much, just once in a while.
    have you changed your diet? do you juice?

  5. Hi, I look in from time to time to see how you’re doing. I’m in month 5. Sorry things are still tough, its a difficult road to recovery for sure, but the only way. Thankyou so much for posting your photos. I was immediately able to understand my skin was addicted by seeing your whole eyelid area flake like mine, as well as whole face, neck and chest flares. Here’s to fabulous skin in 2013, if not some glimpses of it this year! x

  6. Honey…I am SURE you have Subacute Cutaneous Lupus Erythematosus (SCLE) ! Just came to look at photos again.
    If you google “Subacute Cutaneous Lupus Erythematosus (SCLE) Images” you can compare. ( i don’t know about other search engines’ images…)

    But as one who has swept up tons of flaked skin into dustpans…really, I think it must be.It is very like drug induced lupus…but that goes away much quicker too. It would not last this long–though an untreated flare could. Will you e-mail me or reply to comment?

  7. I looked at the SCLE pictures, and I also have to disagree with you, Desiree. There are a couple of online forums for people with “Red Skin Syndrome” and going through steroid withdrawal, and we all look like the pictures on this blog. We all suffer from the same symptoms described here on this blog. It also takes a long time to heal. I am currently in month 18 of my steroid withdrawal. It is brutal, but there is definite progress. I’m glad to hear you’re seeing progress Juliana! I hope you’re starting to feel better!

    • kyaro! thanks for supporting me and speaking up for me.. feel so tired to defend myself against that SCLE thing. I’m feeling better! but still feel quite demotivated some times because it still doesn’t go away completely! URGH!

  8. Hey thanks for sharing the pictures. I’m also having a hard time with the red skin syndrome. My skin sheds, sometimes looks crinkled/wrinkly and red. The redness seems to come and go everyday.

    Dermatologist and doctors aren’t any help..especially the one who prescribed me the steroid creams… Do you know how long RSS can take to return back to normal? Is it 1-5 years? Thank you!

  9. Hello, I’m off steroids for one month and my face is exactly the same as those in the photos. The whole face is peeling😦 It has been 4 days… For other parts of my body, the cycles are rather short, lasting for a few days only, I’m afraid this might not be the case for my face… Was yours peeling the whole time?

    And I’m in JC now, this year is my A levels… I’m so afraid the stress will worsen my conditions. When the skin is peeling, do you use any products to cover/hide it? I feel so embarrassed in school😦

    Hope you’ll heal real soon, jiayou tgt!🙂

  10. Hey guys. I myself have been using steroid creams on and off since I was 7. It’s been more than 13 years since. I decided to stop using that cream a few days ago. And hell is beginning for me…😦

    If anyone of you is from Singapore, I recommend seeing this TCM. Apparently she is very experienced with treating eczema and other skin diseases. You guys may want to give it a try.

    Here is the link to her blog, http://drongsweeling.blogspot.sg/2011/10/eczema.html.

    Good luck and hang in there friends. May we get through hell and into better days.

    • thanks for sharing resources, but I must let everyone know that even with TCM, one will not be able to suppress the withdrawal symptoms. it may or may not speed up healing, that is something no one will know.

  11. Hi, I just came across your page.
    Thank you for sharing your process of healing.
    When I looked at the first few pictures of your hands, they reminds me of my sister who is suffering from eczema.
    She has been suffering from many years, and her skin is always red. When she is out in public many people will look at her, and it breaks my heart to see her suffer.
    I would like to ask if you had difficulties looking for a job(if you’re working) because of your skin condition?
    My sister was rejected from a job position because of her skin condition. I am worried that people might not accept her because of that reason.

    Thank you very much once again.
    God bless you.

    • hi there! you are most welcome : ) i’m glad to be of help in some way or another.

      there was once when i was applying for a summer job as a relief teacher, upon knowing i have eczema, they require me to get a full body check up (which i didn’t eventually because it was way too troublesome), so i guess i was rejected in a way?

      i hope your sister finds out the real reason behind her eczema and get it under control, hopefully without steroids. please don’t worry about people not accepting her for that reason. people might be shallow, but those who matter don’t mind.😉

      god bless you and your sister too!

      • thanks for your reply🙂

        she is currently using QV moisturizer. she has been to the skin centre but was told that there is no cure for her eczema. she used steroid cream for a while years back, but she has stopped using since because she said that the cream feels oily on her skin. i hope that i will be able to find ways to help her with her eczema.

      • that was what the derms told me when i visited skin centre too. “you can’t cure your eczema. you can only manage it (with steroids)”. that’s fucking bullshit.

        i’m glad your sister stopped using steroids. since she’s not going through TSW (i assumed so, since you mentioned she stopped steroids years back), perhaps she can consider TCM?

        i have also used QV moisturizer before, that is so oily and greasy. URGH. why not try something like physiogel lotion? IF your sister’s dry skin is caused by the lipid barrier dysfunction, then that particular lotion might help. i tried it and it doesn’t work for me. haha, pardon me, nothing ever works for me other than steroids.

        i’ll see what i can help with, just bounce me any questions! good luck!

    • I have atopic dermatitis since i was 7 years old, but topical corticosteroids have been working well for me. However, when i had job interviews I never really had a problem if you explain them the symptoms and how the condition works. In my case, I usually tell that this is something internal, it is not contagious. I’ve seen people with really bad acne working in cafes though.

      • hello! I guess you must be one of the very lucky ones to tolerate topical steroids! most of us couldn’t get it to work it’s charm anymore. understanding people will definitely help in the managing of the condition!

  12. Hi- just looked through the pics and read some of the comments- I can relate to so much regarding to steroid withdrawl, I have been on them tgis year fro excema dn am dying to get off them – on a steroid reduction now and have been off work as a nurse since nov 12, I have a moon shaped face and dark pigmentation which has really affected me psychologically- there isnt even a support group in my area- i have been px 3 diff types of immunosuppressants which didnt help so i am trying sea salt cave therapy- drinking loads a water, use aloe vera, keep busy like walking -its soooooooooooooo hard though

    • hello! you have come a long way, it will take a while but please be patient. treat it as a break from the world, it sort of make mundane stuff we used to neglect seem so much more attractive than it used to be..!

      god bless you, hope you feel better soon.

  13. Hello there, I was just doing my research on steroids and withdrawals just to confirm my worst fears and I came across your site. I decided to stop using Elomet a few days ago. I have tried stopping but I just couldn’t. I didn’t even know it was steroids until 2011. Since then I cut down but not stop (I don’t use it everyday though, never had). I haven’t been very comfortable using it after knowing that it’s steroids. I am actually frantic and heartbroken at the moment. My heart sank after knowing the truth because I am going through withdrawals right now. I just never knew about it hence the extensive research. It’s itchy but I’m not scratching it. Technically, it’s day 3 of me using natural remedies, it worked for a bit but tonight, right now, it just doesn’t control it anymore. I had to use some cooling powder. I don’t use makeup and never have been, so that definitely won’t aggravate my skin. I think I haven’t used Elomet for a week or less, I can’t exactly recall. But after reading your post, I am worried and scared. I am so so so worried about what is in store for me. I’m trying to prepare myself but at the moment, I can’t seem to do so. According to my mom, I had eczema as a kid but I don’t remember it. I just remember having sensitive skin. Regardless, what is done is done now, as you mention, it will be a tough journey and it certainly will. In just a matter of days, I sank so low. I don’t mean to sound so whiny or whatsoever but I just want to thank you for posting this. I am glad that I’m not alone in this. Thank you so so so much.

    I have a question, while you were going through this withdrawals, do you use any cleansers and/or moisturizers?

  14. My face looks exactly how the pictures do! I didn’t know why my face was peeling so much and super flaky just like how the picture looks and super red I stopped going to the doctor a long time ago so I stopped using all those creams until when I started doing eyelash extensions and getting exposed to harmful chemicals in the glue (I grew a sensitivity to a chemical) my eczema started coming back bad and on my face which never happened when I was younger. When I went to the dermatologist she explained that my eczema was gettimg worse so then I went back on the cycle of getting steroid shots and what not knowing its bad but I just couldn’t take the way I looked and it helped clear my skin for the time being but after about a month of the shot and prednisone I do notice my skin getting worse and explains.my face being really flaky especially my eyelids and red. I would usually have to scrub all of it off as best I could and underneath it all my skin would be fine and after moisturizing it it looks fine but the flakyness would come back a few hours later. Skin has been really bad lately so I resorted to applying some TS cream on certain areas which temp helped by the looks of the pictures I’m not sure if I’m ready to go through all of that. Any tips on the journey?

  15. sorry for my lengthy sentences previously haha it was just that basically all your symptoms i can relate! thought it was just me. how long til this nightmare ends? at times i feel like I just want to give up and slather some TS or rip my skin off!
    The last time I used steroids was about 3 months ago when I went to the doctor and got a shot and also got prescribed prednisone (which was ordered to take 4 the first day then gradually go down to 4 3 3 2 2 then 1 on the remaining days) but 2 weeks ago was when my skin was getting really bad i applied TS for only a day or 2. Does that mean my whole process of withdrawl starts over again?

    Also, how did you go about being in public? Everytime I’m out in public I feel self conscious or people would always ask or say my face is red but most of the time I try to apply make up over the redness, helps a little but not 100%. When did the redness/flaky skin on your face go away?

    Did you always feel tired or drained? because I always do and its usually during the day time and at night i seem to be wide awake. I sleep around 7am and force myself to get up around at least 2pm if I dont have to wake up earlier. but waking up is the hardest part for me.

    • hey jaimie,

      how long till this nightmare end:
      my skin got much better after 20 months, after that i can function like i used to again. so.. 20 months for me.

      does that mean that your TS withdrawal starts over again?:
      i can’t answer that. maybe, maybe not.

      how did you go about being in public?:
      heads down, try to be invisible, try not to go out at all.

      when did the redness/flaky skin on my face go away?:
      during my first flare it went away in 3 months. during second flare, they lasted pretty much an entire year.

      did you always feel tired or drained?:
      depends. if i manage to get some sleep i’ll be fine. i slept in the day and was up all night. the circadian cycle is messed up.

  16. I stopped using steroid creams for my eczema.i have had eczema since i was a baby and i bought cortisone creams for it my whole life.i am on my second month and i want you to know that without your pictures to show how painful and difficult a decision it is to stop using the creams that i would have started using cortisone creams again.i am having flare ups after flare ups but i have hope that in a year i will be better and i am grateful for your documentation so i know what to expect during this horrible time in my skins life.thank you.

    • dear laura,

      you’re most welcome! this is my whole point of sharing my photos on this blog! i’m glad that you have received some sort of comfort and assurance through my blog. you have to hang on tight because the journey won’t be easy! you’ll get there eventually though. don’t stop believing!

      stay strong and good luck!

  17. hi, I’ve just started this TSW a couple of days ago and my face is really sore and flaky. its a lot like your pictures so you can understand what im talking about. iive on been diagnosed with eczema like 11 months ago and i’ve been on steroids for about 9 months for my face and they only temporarily hide the issue. I’ve felt like this is actually pointless ( the TSW) but seeing your pictures and telling your story has motivated me to carry on. so I just want to say thank you for letting me know what to expect and reminding me to stay strong, cuz believe me this s*** aint easy!🙂

    • hi mohamed,
      i’m sorry to hear about your plight. i know what you’re talking about and you are absolutely right, this shit ain’t easy! thankfully you only used steroids for 9 months, which isn’t too bad (compared to my 8 years and body wide usage). you can be assured that you will heal up in no time! gotta be patient!

      don’t stop believing!
      stay strong and good luck!

      • guess what doesn’t kill ya makes ya stronger. how did you cope with the long healing process?

        will do. yet again thank you!

      • I had a lot of support from my family, my closer friends did their part in cheering me up whenever they can and left me alone whenever I feel like going under the radar. other than that it’s a lot of dramas that kept my mind off it, and a lot of time spent laying in bed doing nothing, just waiting for time to pass.

        I wish I did more than that.

  18. i understand Juliana , that’s all ive been doing aswell. its made me very reclusive and I guess some people think that ive changed, as in I used to be very social and always out but now my rooms become my world. musics all that helps me to be honest, even training did at one point but had to cut that off for a while till I heal up :/ as a guy, im used to bottling up stuff but it kind of helps talking about it, even as im typing lol ridiculous I know:/

    • everybody I’ve known who have been through or is going through TSW became a hermit at some point in time. it’s very normal! and it does help talking it out sometimes, especially with other people who are going through the same thing because it’s quite comforting to know that you are not alone in this.

      I hope you feel better soon, and that your friends understand what you’re going through.

  19. yh it is comforting. makes it seem a lot more normal than I thought it was. its like a long pause on your life, no different from serving a jail sentence. but such is life, only temporary rite🙂 . its difficult but gotta try and remember there’s worse things out there. thank you tho, for sharing your ordeal with this underestimated condition how long did it take you to heal your face and get your complexion back?

    • you can visit the itsan forum if you want to speak to more people who are going through tsw.

      it’s good that you can keep a positive thinking. it’s very useful during times like this.

      you are most welcome🙂 my face took 22 months i would say, to look 80% normal. as for my body, it took slightly longer, probably 26 months.

  20. bit late but thank you. 4real! I was having a really bad night because of the extreme painful dryness of my skin, so i thought to check your blog for some mental uplifting. Before I stumbled onto this heaven sent blog of yours, I was actually accepting that this is how its going to be forever but u’ve given hope and inspiration. its funny how someone I’ve never met can have such an impact, I’ve just looked your before and after photos, and I didn’t realise how beautiful you are. the transformations insane. another motivational asset🙂 again thanks and I hope you don’t mind if I holla now and then BLESS😀

  21. Hi all

    I recommend First Aid Beauty’s ultra repair cream for eczema. It’s available at sephora in s’pore.🙂 Try it! I think it works wonders and they are supposed to have minimal ingredients.

    • thanks for your recommendation regiina, but sadly most of us who actually visit my blog do not suffer from said eczema. we’re just going through topical steroid withdrawals. i’ve tried a tonne of creams that the dermatologists have recommended but to no avail.

  22. Oh and may I know why you have water retention in your legs? I have water retention as well but it’s due to another problem. I totally understand how it feels! Argh, even old ladies can walk fast then us.

  23. Thank you so much for your blog, I am african american and I haven’t found anyone of my ethnicity who is going through this. I have been off steriods for almost a year, it is borderline UNBEARABLE. the itching is the worse, I cannot fanthom how you survived this without losing your sanity I am dead serious! everyday I want to cry but I think about the severity of my condition and yours and I know there is hope! I am currently in nursing school and sometimes the itching interfers with my studying! reagrdless thank you!

    • hi there! you are most welcome!!! i am sure there are other african american going through this, you might be able to reach out to a few via the itsan forum?

      my skin was at its worse a year after i stopped steroids, it was really depressing, but things did improve after that!!! hahaha i lost my sanity many times before, but there are no other ways.. so i kept trotting on, holding on to the hope that i’ll heal eventually thanks to dr rapaport’s declaration, as well as dr fukaya’s experience with TSW patients.

      i’m sorry to hear that you still have to go to school when battling such a tough condition.😦 but let me tell you, you’re incredibly strong to be able to undertake that. i’m more wimpy, because i actually took a year off school so i can hide home where the world can never see me. you’re much more courageous and braver than me!

      you’ll need a lot of strength to keep it going.
      stay strong girl!
      XOXO

  24. Hi Juliana,
    I’m glad I found your blog. I almost reach my 2 months mark with TSW. My arms and hands doesn’t bother me much at the moment but my face is. I saw your photos of your TSW on face. The state of my face is currently like the ’20 Nov’ photo’s of yours. How do you handle and cope with it? I am seriously having a terrible time trying to stay sane and positive. I never showed my bare face to my parents or any other people…I covered my face like an Arabian lady. Sigh. My parents tried to support me when I first started TSW but now that I am in such a horrible state, they told me to stop it and go to the hospital. Sigh. I don’t know what to do anymore. Will you please help me? I am sorry for being such a negative brat. Thanks.

  25. Hi. You have such an inspiring story. I wish I had the same courage as yours. I am a user of a chinese fluocinonide for 5 years. I actually didn’t have an idea that it was a steroid since I cannot read chinese. I used it as a night cream for 5 straight years without knowing it was a dangerous cream. It is sold everywhere here in the Philippines, even in the grocery counters so everyone including me can buy it at any given time without prescription. Right now, I am actually trying to wean it off by using a lower potent steroid, hydrocortisone. My skin is ok at the moment because of the hydrocortisone. But because I’ve learned from your blog that I have to stop using steroids cold turkey, I am now beginning to feel scared. Did you use moisturizer while on your TSW? Will it help?

    • hi daphne! i can’t help but go “OMFG” when i read that you can get steroid creams so easily without a prescription over there in the philippines.. and the thought of you using it as a night cream :O NO WAYYYYYYYYYYYYYY!!!!!!! who the hell is so unresponsible to sell these drugs without proper warnings!?!??! wth!?!?!?

      sorry for my strong reaction, but i feel that you’re even more innocent than many of us as we used steroids knowingly to treat our skin problems. but you, you know NOTHING!

      i hope the concentration of steroid in your cream is really low. flucinonide is pretty potent..:/ you can choose to wean yourself off slowly using hydrocortisone, but the truth is you’re only dealing more damage to your skin by continuing with the topical steroids. i can understand why you feel scared.. but then again, if you do not have skin issues like atopic eczema to begin with, it may be easier for you to withdraw from steroids and break any addiction that you may have.

      i did use some moisturizers during my TSW, it didn’t help my skin recover any faster, it just helped to make it feel better because it will dry out and crack (especially on my joint areas).

      god bless you!

  26. I m very sad to see this may God help you for this. My cousion has very red skin syndrome she had same widrawl symptoms , she was flaking up. She use jojoba oil vit e and yogurt all over the body she got extremely good result with it. N combination she was using msm tablets for detoxification. Trust me I hve not prove bt it has an excellent result. I m not lieng nor I will earn any thing.
    Now coming to my skin problm I m using very potent dermovate from last 8 years on skin. Now I m very upset. I got thin skin, red skin, tiny vesels on face, n bumpyskin and large pores when I stop using it I get acne break out all over on face.. m very worried. Any idea plz? M gng to start msm tablets with collageb pills for skin thickening bt am afraid of pimples…

    • hi ameer,

      my skin has already healed in case you don’t already know. i still have some sensitive skin as my steroid damaged skin is still healing, but it’s no longer that wreck it used to be. thank you so much for being kind!

      i am not too sure about acne eczema, so i can’t help you much on that. but one thing i know for sure is to let quit steroids because you’ve already been on it for 8 years, that’s too long. steroids just isn’t the long term answer to keeping your pimples at bay. you should find out the original cause of your pimple outbreaks and get rid of it. but for now, it seems like the steroids is what’s causing your pimples.

      i hope you find your answer soon!

  27. Hi Juliana,

    Thank you so much for sharing your blog and providing such excellent help. I’ve been on topical steroids particularly hydrocortisone and clobetasol propionate for about 4 years and have recently thought about stopping and putting an end to my eczema that might actually be TSW instead. The problem is I start school in about two weeks and don’t want my skin to explode out of nowhere during the school year. It is also my last year of college/university and I have a lot of things planned/set for the school year so taking a leave of absence isn’t a very good option in my case. Any ideas on what you would do in my situation? Thank you🙂

    • I would use a non steroidal treatment to tide through this period of time first, assuming you have time to let your skin heal naturally after that. NSAIDs are an option, alternatively you can check out salcura dermal spray, they are supposed to reduce inflammation using natural ingredients. a good replacement for steroids, but it’s not a long term solution either. hope this helps! you’re most welcome😉

      • Hi Juliana,

        Ive been diagnosed with atopic dermatitis on my hands for over 5 years. I’ve been prescribed topical steroid (triamcinolone, bethamethasone, fluocinonide, clobetasol, halobetasol, prednisone, and also 2 shots). The last dermatologist told me there’s nothing more he can prescribe me with but Protopic (which will be very expensive). That’s when I knew I had to find another solution. I stopped the steroid usage, saw an acupuncturist for 4 sessions, took Chinese herbal detox tea, and even changed my diet! Nothing works! In fact, it was getting worse. I came across your blog and saw what u wrote about tsw. This gave me a little hope that everything is ok and that my body is just going thru withdrawal and repairing itself from all the damages that was left behind. What did u use to help relieve the itch? The itchy bumps has spread to most part of my body (except my back). My face and eyes are swollen as well. Is that normal? All from hand eczema? Help!

      • hello there,

        yes, your swelling is normal because TSW is a systemic reaction, for the first few months at least because our skin have absorbed the topical steroids into our system.

        i didn’t do much to relief the itch.. i heard showering in cold water, doing cold compresses help. but nothing works better than gently caressing my skin.

        i’m sorry to hear bout your situation😦 after all that steroidal abuse.. sigh. good luck! it’ll take some time before it heals. if you’re into chinese medicine, maybe you’d like to try out this TCM i used to visit, i do feel like i heal a little faster while on the medication. it’s gingko TCM at rochor centre. you can google out the details on your own right?

        good luck.

  28. Thanks a lot for this blog. In 2007, after 13 years of using diprosalic mostly on my scalp, I found Dr. Fukuyaka info about TSW and decided to stop (I have had eczema since I was 4, but my parents were wise enough not to use the steroids at first – it is when I was 18 years old that a dermatologist said that it is the only way to cure it). For 7 months, I was covered with eczema on my upper body, face and scalp during the TSW. Reading the studies and the few info about TSW that was available at the time helped a lot. Since then I managed to control my eczema without steroid and it got a lot better. But about 15 days ago, an infection (at fist we didn’t know) made my face and scalp in such a bad shape that I decided to see a dermatologist…BIG MISTAKE. They gave me prednisone (they wanted to give me a steroid shot!) and some topical steroid. The course was going to be 3 weeks! When I realized that it was an infection, they gave me augmentin, which immediately stopped the skin infection. But now I am still going through some withdrawal, for having used prednisone for 8 days and some topical steroid, but not as bad as last time. Those websites are so helpful. We must stay away from steroid and the skin can deal with the eczema better. There will be some relapses. I had 2 terrible episodes 3 years after I stopped the steroid when my grand mother passed away. Just used a lot of moisturizer to help. Went to the seaside to swim. The body can handle it. If it gets really bad, check for infection, do not do as I did and take steroids again.

    • thanks for your comment daphne.. i think steroids made our skin more fragile than others, as in.. they’ll be more fragile when the internal environment is going cray cray while other people going through the same emotional turmoil wouldn’t have broken out like we did. i totally agree with you – staying away from steroids. thanks for your suggestion too, so far i haven’t noticed any sign of infection yet! but i’ll definitely keep that in mind.

      xoxo

  29. Hi Juliana,
    I love how organized and informative your blog is! Very cute! Your skin never looks like you scratched it that bad, any tips on not scratching?
    I am one week away from being 5 months in🙂

    • hello lisa, thanks for the heads up!🙂 i actually scratch it a lot back then, but i try my best to not scratch too hard. i always cut and file my nails so i can’t deal too much damage to my skin. i also use the back of the nails to glide over my skin some times too! good luck!

      • Hi Juliana, I have been using tropical steroid ( betamethesone )on my face for about four to five years now. I noticed dat any time I try stoping for some days my face gets itching and rashes spreading gradually so I will just apply a little bit of d steroid to help clear it. The first two weeks I tired stopping d cream n watching to see wat will happen to my face it was real hell becos my face was so dried, red, itchy n rashes all over so I gave up by applying very little of it for two nights. I never new I was going through the TSW until I searched about the cream on net and decided all this most end now. I am now entering my second week of the TSW. The first week of steroid cream cream was really ok. My face was looking good, I was not itchy, no red skin and little or no rashes. Buh last night, entering the second week I started having rashes like all over the face buh am not itching . I am really scared, I can mange this in school today buh I don’t know how it going to look like in the later time. Do u think I will be able to go to school( college) while going through this TSW? I have a black skin, just wana know if it gona get worst like seriously so bad, and how long I would go through this process. Thanks a lot.

      • hey there, sorry to hear about your situation. the beginning weeks of TSW is very scary because we’ve never seen our skin turn this bad before. i mean, we’ve never allowed our skin to get any worse because we can always apply more steroids. to quit steroids, you’ll need lots of courage.

        i think you will be able to go to school through TSW, but it’ll be very tough. let’s just say it takes a lot of will and effort to try to stay focused on things other than the skin.

        the withdrawal symptoms is likely to get worse as months go by, dr rapaport and dr fukaya says most people generally heal within a year or two. but from my experience, most take at least 2 years.

        good luck.

  30. I want to share my story, and empathize with yours… Not sure how to join your page? Not really good with my new tablet. I am in a pain full steroid withdraw ell your pictures look just like mine!

    • hi lori, you can’t share your story on my blog because this is my blog, not a forum! if you want to share your story with the world, you can either start your own blog, or share it on the itsan forum!

  31. Hi, Juliana, Just began having eczema in Sept, 2014. Im 56 yrs old. Never had this problem. Went to a dermatologist and was given Clobetasol Propionate at .05%. My problem was on my both my palms and both soles of feet. Only used this cream 3 weeks. Stopped the cream and the rash spread in small red spots up my ankles and lower legs. Decided not to use ever again! Now, my hands and feet are red as hell! Already got through the burning part of this withdrawal. But, Im experiencing very, very dry peeling dead skin. Have to moisturize every day with heavy ointment. The itching was driving me crazy for awhile. Im determined to get well and get back my normal skin. Almost all the skin on the bottom of both feet has peeled away. The skin is shiny and glossy. Your pics and story has given me much hope! You’re such a beautiful girl! I do take some supplements such as D3 and zinc, multivitamin, fish oil, calcium and collagen supplements. Some days are better than others. I stay isolated much of the time to cope with this problem. Have had depression, also. I will keep my strength up to deal with this after viewing your pics. I’m in the United States and I wonder if many people here are experiencing this problem as well. I have viewed many stories on YouTube. I’m so glad you finally got well! You have the rest of your young life ahead of you to live. Enjoy your youth! Many blessings to you, sweetie….

    • hello kim, sorry to hear about your story! 3 weeks of clobetasol isn’t too long, i’m sure you’ll heal up soon! there are a lot of skin friends in the US who’s dealing with TSW too, you can probably seek support from the ITSAN forum!🙂 thanks for your comment! i wish you a speedy recovery!

  32. Hey, Juliana. You’ve been through a lot. My gosh. I’m at month 15, into a second flare. It’s kinda classic red skin syndrome at this point over my face, chest, and part of my arms. Did you notice your skin manifestations evolving over time? I mean, for me, it was the burning and shedding that was a disaster for the first phase with large, crusty flakes, and now shedding has subsided a lot. Instead, my skin is just bright red, and often itchy and dry. I feel hijacked by the creams that were intended to relieve symptoms. Take care,

    Marshall

    • hey marshall! yes, i notice changes in my skin over time! it’s minute, but i see the change. it used to take months for me to observe any changes, but now i see them pretty quickly😀 i totally feel you when you said “i feel hijacked by the creams that were intended to relieve symptoms”. we all do.

      from my perspective, any change is a good sign because it means your skin is moving along. it’s some progress!

      stay strong!

  33. Hello Juliana,

    First of all, I just want to say thank you so, so much for this blog! I find the ITSAN forum along with other blogs a little too bleak and gloomy, so your blog is one of the few sites I go to in times of distress. Your pictures keeps me determined and hopeful.

    I have a question though: two months into TSW, and it’s manifested into several growing patches of oozing, scabbing, red wounds- exactly like the one that was on your shoulder. Once it scabs up, it falls off eventually, but the skin underneath is spongy and red and thin with oozing holes and basically not like normal skin. It will then ooze enough to form another scab and so on…. I was wondering what the healing process was like for you with regards to these type of wounds?

    Thank you!

    • thank you emily for your sweet comment!🙂 always happy to be able to share some positivity with you!

      those spongy skin is very typical of TSW. it took me several months to heal those wounds, which i call “bloody wounds” because they won’t heal up quick enough. hahaha! the process will keep repeating itself until it finally heals.. irritating, i know.. but it’ll end some day! in the mean time, soak up the ooze if it’s bothering you!

  34. hi, I’ve been using 4 years of steroid on my face. I stop about a month now. my skin is red and flake :<< I used aveene spay and la roche posay lotion. I am supposed to used any kind of lotion or sray like that? what do you use when you cortiseroid withraw? and how long does it take totally heal? :(((( I really thiking of suicide :(((((

    • hi there, sorry to hear about your condition! if the spray and lotion helps, you can continue using them. when my skin was oozing i didn’t use anything at all. i only used vaseline when i could tolerate it. it can take anywhere from a year to 2 to heal completely. stay strong!

  35. Hi,

    I was so amazed how strong and brave you are to surpass all of it. It was really an eye opening to everyone.

    I’m having a Rosacea in my Face and most of the time I’m having sudden hives in my body. Doctor give me steriods. I know it’s way different from eczema but dermatologist keeps prescribing me steriods then I came accross your blog. Which is very interesting and a lot of learnings.

    I also live here in Singapore. I think I should stop using steriods after I read your blog.

    It’s very helpful! Thank you so much!
    God Bless you more.🙂

    • hi riah! sorry to hear about what you have! hives are usually caused by food allergies, have you gotten your blood checked to see if you’re allergic to certain foods? try to heal your body holistically rather than relying on drugs! stay healthy!

  36. I’ve just stopped steroids this week and am really anxious and dreading what’s to come.My eyes are swollen and so wrinkled I’m 45 old and think maybe this is how I’m gonna look like from now on and that it’s part of growing old but I look worse than most 70+ year old . Emotionally I’m all over the place + kids don’t understand why and what I’m trying to do and achieve.How are you now it’s been a few years since you posted those pics.

    • hi shamim, my skin has been good and then got bad again, but no where close to when i first came off topical steroids. the only thing i can assure you is you’ll not look like this forever. i’m currently treating my underlying eczema and it’s seeing progress. don’t lose hope! it can be difficult to pull yourself together when no one around you understands what you’re going through, but you can, and you will make it.

      stay strong!

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