1. Community
  2. Skin and nails
  3. Dermatitis And Eczema

Red Skin Syndrome re: worsening atopic dermatitis

Posted , 33 users are following.

MissKitty
MissKitty

Hi guys,

Google 'Red Skin Syndrome'. I have suffered worsening 'atopic eczema' since early childhood (now 29 yrs old) and have discovered that I am one of the unfortunate individuals that have become addicted to topical steroids. They, and not eczema, are actually the problem.

Not trying to be a nutjob about it, not trying to convince anyone to buy anything and not trying to preach. The discovery of this condition has been a major turning point in my life and I would urge anyone suffering to at least have a little look at some of the articles and see if this thing matches what you're going through. If you educate yourself via the articles or look at other people's blogs (there are a *lot*) then you can make an informed choice about if this applies to you and how to manage your skincare.

Much love xxx

6 likes, 82 replies

82 Replies

Prev Next
  • mikki04140
    mikki04140 MissKitty

    Posted

    I have been suffering with eczema for over 10 years now using steroid creams and taking oral steroids for around 10 years, have been to many doctors dermatologist and naturopaths for them all to say you are a mystery we don't know how to fix you. In desperate need and just by pure luck I just stumbled across an article regarding red skin syndrome I am now 3 weeks into being steroid free but it's almost killing me. I am using just a moisturiser and coconut oil but do you have any suggestions on other tips tricks and products I can try during a flare up. Can you also give me any websites you might have that can offer support.

    Very much appreciated, thank you.

    • gastricity
      gastricity mikki04140

      Posted

      Hi there,

      I'm only a few weeks into my withdrawal as well, but to be honest I'm probably not suffering the way you are because you've been on much stronger doses and for a longer period of time.

      I find ITSAN and Dr Rapaport Web pages are useful for support... Google those, Dr Rapaport has a you tube video, this condition is also called topical steroid withdrawal so you may want to Google that too and see what you find.

      Hope I've helped... keep strong your not alone xxx

    • mikki04140
      mikki04140 gastricity

      Posted

      Thank you for you advise. Every little bit of advise I can get is greatly appreciated, I am doing this alone as all medical professionals I have been to think I am completely crazy for even suggesting red skin syndrome. Will research Dr Rapaport. Thanks again for your help, it's nice to know I am not alone in this battle. Xx
    • Bellla
      Bellla mikki04140

      Posted

      TSW/RSS can happen simply by using steroids anywhere from 3 weeks alone. The general rule of thumb is the longer you use them, and the higher the potency, the longer the withdrawal will be. Withdrawal can be anywhere from 3 months to 3 years but the average is 2 years. It's not only skin symptoms, Systemic symptoms are very common. Going cold turkey is the only recommended way to withdraw, zero therapy. Moisturiser withdrawal (including anything on the skin) is necessary through withdrawal. I'd highly recommend joining support groups. Facebook have several. Also watch Dr Rapaport videos. Although whilst he's great at TSW, he's not very knowledged on things like excema caused by allergies which is what many people are using steroids for.

      Feel free to message us

  • MissKitty
    MissKitty

    Posted

    Hi all, thanks to everyone for getting involved in this discussion. I've just noticed that some of my past replies have been deleted by a moderator and I'm not sure why - please accept my apologies if you have not received a response! smile
  • yvonne0871
    yvonne0871 MissKitty

    Posted

    Hi all

    Just started the withdrawal phase, not a pleasant experience

    Dealing with chills and hot skin in places where I haven't used

    Steroids. Unable to sleep.

    Been on and off steroids 3 years hope to kick this "addiction"

    Quickly

    • MissKitty
      MissKitty yvonne0871

      Posted

      Hi Yvonne,

      Sorry to hear of your skin troubles, though great work on getting started. Hang in there and take as much medical and emotional support as you can. Look after yourself. Lots of love, Jo x

  • palmtree7
    palmtree7 MissKitty

    Posted

    Hey all. Been on cortisteroids for 3 months. Mostly to control psoriasis which covered most of my body. Was prescribed medium to very high potent topical steroids (Topicort 0.25% & Clobetasol). It worked great and cleared most of my psoriasis. Used a bit of topicort on face occasionally and had no reaction. Applied to face few days ago. Woke up and it cleared redness but then reappered at night. Face is now red and looks like spreading down to neck. Skin and body feel hot like a burning sensation. I am not using anymore cream to see if it heals. Could it just be a bad reaction to the cream? I'm an idiot for putting it on my face, I know. 
    • MissKitty
      MissKitty palmtree7

      Posted

      Hi palmtree7,

      Sorry to hear of your skin troubles. It's named 'Red Burning Skin Syndrome' for a reason I'm sorry to say; the two primary features being red skin and a burning sensation. Faces are particlarly susceptible (I heard on the grapevine that they called it 'Betnovate face' in the UK in the 70s) and there's a bunch of literature under various names. The NEA in the US has uncovered a bit more info recently: https://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/.

      Obviously get checked out at the doctor to check for infection or anything else but if they fail to identify anything other than 'weird unexplainable red burning rash on face' and recommend using more topical steroids, perhaps think twice....

      Hugs, x

  • Aristotle13
    Aristotle13 MissKitty

    Posted

    Hi MissKitty

    I too used topical steroids for some years before the reason for the use seemed to disappear.  Had several clear years and then the rash started on one arm followed by the other followed by some leg coverage.  At present I've tried to stay away from the active medications and am using a medicated moisturising barrier cream which seems to give some relief as long as I clean it off and replace it with fresh cream both morning and night. Doctor advised no soap, just plain water and gentle rubbing.  It seems to be working.  Haven't a clue whether this would work for others but I shall enjoy it whilst it works for me.

    Don't know if this info is useful to you but best wishes and good luck with whatever you end up doing

    Regards

    Aristotle13

  • rennieb36
    rennieb36 MissKitty

    Posted

    Hi everyone.

    I have been using steroid creams all my life I am nearly 40 now, it started with aurecort ointment till it got discontinued I have been using betnovate on my face for the pass 10 years. My chin started to come out in blisters for the pass year and the doctors did not have a clue why this was happening the betnovate was not helping it at all.

    This is my first day not using betnovate and my whole face is so sore already.

    I am so glad I have found this page. But am also worried cause I don't think I could manage work with my face feeling like this. How long will the last?

    • Manuka
      Manuka rennieb36

      Posted

      I'm sorry rennieb but topical steroid withdrawal can last a while, so some preparation will be needed as it has the potential to affect your life quite a bit as you recover. There are some good support groups out there, including on fb, which can let you know more about what to expect and how best to prepare and some options to help with symptoms. Good luck xx

    • shay0708
      shay0708 rennieb36

      Posted

      My boy kicked off the withdrawal relatively easy. The doctor prescribed the following:

      Switched to lower steroid cream for two weeks, mean time twice daily elidel a non steroid cream, twice daily Claritin. Elidel takes several days to start working. Didn't cause burning. The combination of these took two - three weeks. And the skin was so much better. He had the eczema all over hands, arms, legs, inner thighs and groin. Terrible times. I hope this helps.

    • Bellla
      Bellla shay0708

      Posted

      Cold turkey zero therapy are the only recommended way to withdraw sadly

      Also Elidel can cause the equivalent of TSW/RSS I'm sorry to inform you.

    • Manuka
      Manuka Bellla

      Posted

      Just for clarification, there are a number of therapies suggested to cope with the withdrawal symptoms, for help with sleep, itch, any pain etc. Please research all you can.
    • Bellla
      Bellla Manuka

      Posted

      I was talking about skin solely to the specific person my comment was replying to. Systemic Symptom management is a different topic.
    • Manuka
      Manuka Bellla

      Posted

      Hi Bellla, seems there is some confusion. Tsw symptoms can benefit from systemic treatments to ease symptoms and these could help the original poster who may be starting a full withdrawal from using a potent topical steroid for decades, including use face which is a highly absorbent area.
    • Bellla
      Bellla Manuka

      Posted

      Hi.

      As you'll see my comment was to a commenter, not the op.

      However thanks for re reminding me by default that I should remember most people not being doctors or medical professionals don't naturally twig the difference between treatment for a condition and symptom management. Even immune therapy for TSW isn't actually considered a treatment.

      Baring in mind I've been in the medical community for 30 years in various ways, had and still have severe TSW, causing low white count, amenorrhea, Dysgeusia, palpations, diareah, temperature disregulation, headaches, nausea, and more. I've dealt with Dr Rapaport and Dr Fukaya amongst others, helped many sufferers through withdrawal, etc etc, so I do understand the condition and all it can bring. Obviously you won't have known this.

      God bless

    • Manuka
      Manuka Bellla

      Posted

      No problem Bellla, you're welcome. I'll keep you in my prayers.

    • david265
      david265 rennieb36

      Posted

      Hi rennieb36

      I had eczema until I was 15 or so...I am now 66, I was prribed Betnovate 6. I was presc

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.