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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

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  • bonnie30241
    bonnie30241

    Posted

    hi everyone

    i just wanted some advice. about 2 months ago i was prescribed a steroid cream due to some rashes i had on my face, i've never suffered from eczema or any other type of skin condition before. however after i stopped using it, the rashes reappeared along with some acne so i went to a different doctor and was prescribed another steroid. iv been using these steroid creams on and off for 2 months, however last weekend i found my face feeling raw and it was burning. i did some research and found red skin syndrome. i feel like it is now spreading across my face, along with a rash. does this sound like steroid cream withdrawal. does it get worse before it gets better?

  • Manuka
    Manuka

    Posted

    Hi Bonnie, it's possible for the body to develop a dependency on topical steroids within a couple of weeks

    in some cases especially if the steroid is potent. The face absorbs a high amount into the body compared

    with other areas, so there's a chance this is what you are experiencing. Unfortunately spreading rashes is

    a tell tale sign and on stopping the steroid, things do get worse before they get better. Hopefully your

    withdrawal period will be short given your short usage time, good luck.

  • MissKitty
    MissKitty

    Posted

    Hey bonnie,

    Try searching steroid-induced rosacea. See also steroid-induced acne! Topical steroids shouldn't ever really be used on the face (usually only in really extreme psoriasis cases as the exception). Manuka is correct - the skin on the face absorbs ointments very effectively and I'm surprised that a doctor would prescribe for facial use for small rashes.

    Burning and spreading rashes are indeed the primary symptoms of red skin syndrome. Hopefully the short usage for you doesn't mean a full-blown addiction and so coming off the steroids will not take as long for you. Hope this helps x

  • bonnie30241
    bonnie30241

    Posted

    i've been moisturing my face as it has been so dry,but my skin hurys when i apply the cream on.is that normal? i've been using avene creme which is specifically targetted at sensitive skin but i'm really scared that it will aggregate my rash even more
    • KajuKatri
      KajuKatri bonnie30241

      Posted

      Hey i also have this problem when i apply a mostiurizer or cream there is this burning feeling

       

  • MissKitty
    MissKitty

    Posted

    Hey bonnie,

    I'm sorry to hear this. I'm hesitant to advise via a forum since every case is individual - I would definitely recommend seeing your doctor and discussing this. Try and read up as much as you can - there are various forums about where more people will tell you about their experiences (I can't link here but a quick search will get you to where you need to be).

    For me my skin was so very very very dry for a long time. Gradually the oils returned and in the meantime it was just a case of finding an emollient that didn't sting or burn. In my case a very thin layer of Vaseline stung and irritated the skin for a little while but allowed me the flexibility I needed to go about my day.

    Do as much reading up as you can. If these rashes are indeed steroid induced (check with your doctor) then time is the best medicine. Best wishes x

  • bonnie30241
    bonnie30241

    Posted

    thankyou miss kitty,i just looked up steroid induced rosecea and i think that is what i have developed.will this go away? alot of people who have suffered from steroid induced rosecea have had to go on antibiotics,but i'm not too keen on that idea.will it go away naturally?
  • MissKitty
    MissKitty

    Posted

    Hi again bonnie!

    Time, time and more time will get rid of steroid-induced rosacea but definitely check with your doctor (well, maybe a different doctor!!) as to whether or not you need antibiotics. Infections (e.g. impetigo or eczema herpeticum) are rare but if they do happen they can be really serious so please make sure you're undertaking any treatment decisions with medical supervision. The rosacea people likely have more information for you too x

  • ADman
    ADman MissKitty

    Posted

    Hi, I am the same 25yrs of steroid cream.. It stopped working last year and it's been hell. 

    I was put on methotrexate 6mths ago and off steroids, but it's not holding it.. Today I am burning red, my face particularly.

    My doc put me on a short 2 week course of prednisone and I was ok during but the rebound is as bad as it's ever been.

    I was wondering if you have managed to keep off the steroids and if so how you are getting on?

    Bad or good.. Best wishes to you

    • MissKitty
      MissKitty ADman

      Posted

      Hi ADman, sorry to hear of your skin troubles.

      I have managed to keep of the steroids and I'm absolutely fine now. The rebound was utterly awful and lasted many months (as the withdrawal from topical steroid addiction syndrome often does) but it has been worth it for me because for the first time in my life I am free from eczema and live a full and happy life.

      So sorry that the meds aren't working for you like they did. You can find out more info from a prominent international awareness charity by searching for red skin syndrome and the upcoming publication of the National Eczema Society's systematic review will be useful too.

      Kindest regards,

      Jo

    • ADman
      ADman MissKitty

      Posted

      Hi Jo

      That is great news, I am very glad for you.

      Gives me a lot of hope, look forward to the blog post.

      All the best now

  • AbandonAllHope
    AbandonAllHope MissKitty

    Posted

    Hello, 

    Been a long term user of Steroids (mainly creams fop about 35 years). I have tried a few times to stop using the cream but have suffered flare ups ... resulting in a short courses of oral Prednisolone to provide some relief.

    Recently came across ITSAN.org and started investigating Topical Steroid Withdrawal, the symptoms matched those I have so decided to give it a go. Stopped using steroids 3 weeks ago ... have had the worst itch rash over upper body and neck (poison ivy and biting ants come to mind), wrists ankles are dry beyond belief (flakey cracked skin) ... but I am resolute.

    Have found that Amitriptyline and an Ibuprofen help me to sleep on a night ... probably not a long term fix ... I'll be going to the doctor to discuss this shortly.

    Can anyone advise a good moisturiser ... there is a catch ... I flare up to anything with paraffin / petroleum as a base ... I've not found anything that I can use. Any help would be much appreciated.

    Not without Hope  biggrin

    • Manuka
      Manuka AbandonAllHope

      Posted

      It's trial and error at this stage. And what works one month can be irritating the next. And no two people are alike..but the skin is really hypersensitive during withdrawal as you know. Some people get on with Shea butter, NHS emollients ( if you are the uk) which are paraffin free ( sorry don't know which ones), coconut oil works for some ( not for me) and some people have decided not to moisturise at all. Good luck, you'll find something soothing. 
    • MissKitty
      MissKitty AbandonAllHope

      Posted

      Hi there,

      So sorry to hear of your skin troubles. Manuka has summed up a great response to be honest - trial and error at different times of the cycle I'm afraid. Make sure to keep checking in with your doctor as TSW can be a real strain on the whole system and it would be good to get support during this. I used a greasy moisturiser of olive oil, coconut oil, beeswax and cocoa butter of my own recipe. As Manuka says, you may personally respond better to nothing at all or to one-ingredient, simple moisturisers. Anything to make yourself more comfortable. Hope this helps a bit. Hugs x

    • jane87302
      jane87302 MissKitty

      Posted

      I was diagnosed with eczema as a kid albeit a very mild case of it. Usually, the most common areas effected would be the elbows. I was prescribed topical steroids which alievated my symptoms and although I can't remember clearly, but I believe I was symptom free for a long time - probably over a decade. In my early twenties, it flared up again, after some stress in my life and perhaps coincidentally after a bad case of sun burn. I was prescribed steroid cream again, only this time, the rash seemed to spread into areas I'd never had eczema before. On the right side of my neck, the right side of my face, my hands, my back and legs. After using steroid cream on and off for about two years now, I've made the decision to withdraw and see if my body can revert back to how it was. So far, there has been a mild flare up, I'm hoping this goes down. In the meantime, what should I use to allievate the redness? My biggest concern is that I'd like to go out but I hate the way my skin looks when its so red and inflammed. How long do I have to wait? I haven't used streoid cream for more than 3 years in a row, it's always been on and off in my life. 
    • MissKitty
      MissKitty jane87302

      Posted

      Hi Jane,

      Sorry to hear of your skin troubles. For red skin syndrome: some people use wrapped ice or cool water to calm the redness down a bit, others can tolerate using make-up to conceal flaring areas. It takes quite a while as well (minimum several weeks or a few months). I appreciate that having facial flares can impact upon self-esteem so perhaps have a read around the information from a charity like Changing Faces.

      Hope things work out okay for you.

      Hugs, x

    • ADman
      ADman Manuka

      Posted

      Hello, I found it very hard to find any moisturisers which are parafin free. but I have been using a gylcerol based cream for years and it is the only one that doesn't make me worse when I am really bad - Neutrogena Dermatological Cream - its a bit thick, I put it on with a bit of water, which seems to be ok as it leaves a thin layer of the glycerol on my skin.

      When I am not too bad I can tollerate Cetraben lotion - which is light liquid parafin.

      I hope you get a bit better soonl, this situation is really stressful and depressing I know, I am off a 25 year topical steroid binge myself. Been a year - still burning, but a bit better

    • AbandonAllHope
      AbandonAllHope ADman

      Posted

      Hey, I too can’t tolerate anything containing Paraffin, Parafinium liqidum etc ...  I have spent no end of money on miracle cures with internet testimonials, without success. AVEENO SKIN RELIEF MOISTURISING LOTION ... uses shea butter as its base and most importantly WORKDS FOR ME!! Its the one with the Blue Cap (not the Green) ... and they have started selling it at ASDA. £5 for a 200 ml tube ... worth a try. (its a bit thick but you soon get used to the feeling … especially when your skin doesn’t crack when you move it!)

      I am now about 6 weeks into my withdrawal ... the back of my neck is like a war zone ... so tender to the touch ... I bought some Boots Cold Compresses today and am going to keep them in a cool box by my bed ... my neck gets hot in bed and then I start to scratch ... at 43 years old I don’t have the wherewithal to stop scratching .. its purgatory ... the cold compress takes the itch away ... then the Aveeno sooths ... lucky that I have found something that works for me. I have also started on a really (/fairly) strict diet no processed foods and lots of green veg, porridge with seeds in the morning, and cod liver oil and proper multivit ... trying to boost my immune system which i think has taken a bit of a kicking. (not only will I have good skin ... I'll look like a racing snake by the time I'm finished!!) Actually feel ok today .. but yesterday i was reduced to tears (twice!) ... what a nightmare…

      Keep a smile on your face because one day you will be rid of this horrible curse.

      Don’t Abandon All Hope.

      Simon.

    • jane87302
      jane87302 AbandonAllHope

      Posted

      I have heard great things about Aveeno Skin Relief as well. I'll have to try it. I've also heard good things about Gold Bond Eczema Relief cream. Have you guys ever heard of Oolong Tea? It's a Chinese tea that is suppose to help with eczema. A study was conducted over a decade ago that showed improvement in eczema sufferers after they drank oolong tea everyday. You guys should look into it! Fortunately I wasn't on steroid creams for long, not as long as a lot of the people here anyway, I used them intermittently (very rarely) from about 2001 to 2012. Between this time I had a break where I did not use them for probably almost a decade, when my skin was fine. In 2012, I began using them regularly after a flare up, and have been using them regularly since I withdrew about 8 days ago. ADman 25 years is a long time, kudos to you for quitting! This is the first day sicne I stopped using them where my skin doesn't look too bad. Yesterday, in the areas I used the cream, it was so red/inflammed that I couldn't leave the house! I tend to scratch only in my sleep so that's where all my problems lie - it's an unconscious thing with me, so I find it hard to stop myself! 
    • jane87302
      jane87302

      Posted

      Sorry, I got the date wrong, I used them from 2001 to about 2012 and there was probably about 5 years during this time where I did not use them at all, not a decade. But I have spent a decade of my life without any type of cream and I just want to get back to this. I find that the steroid cream seems to have brought on eczema or rashes in places that I never experienced eczema in. Ironic isn't it? A cream that's suppose to help, really only does further damage. I wish more was known about a cause for eczema, because this would ultiamtely bring on better treatments and possibly a cure.
    • aysha44584
      aysha44584 AbandonAllHope

      Posted

      Hun try aveeno its good for dry skin or Vaseline wash face with manuka honey I'm fighting this battle of steroids aswel so hard
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