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Red Skin Syndrome re: worsening atopic dermatitis

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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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  • Tosh20122014
    Tosh20122014 MissKitty

    Posted

    Hi everyone

    ive used Eumovate cream for over 30 years and about 7-8 months ago,I had a really bad flare up with my next and shoulders incredibly itchy and flaky and nothing could stop me from scratching.

    went to see a new doctor 3 months ago and he prescribed fexofenadine (anti histamine), Aveeno body wash and Aveeno cream. Itching stopped in a dayand I have only used Eumovate cream 2-3 times in the last 3 months!

    this was also brought about as a result of a discussion re moving away from steroid cream and looking for alternatives.

    everyones experiences are different yet the same and this combination appears to work for me and it has also worked for another patient that the doctor treated a few months before me.

     

    • MissKitty
      MissKitty Tosh20122014

      Posted

      Hi Tosh, that's great news thanks for sharing. I've heard some good reports of Aveeno and as you say it's so different for everyone its just a case of finding what works. Great stuff! smile
  • Lozzle
    Lozzle MissKitty

    Posted

    THANK YOU to everyone for sharing experiences on this subject! I spent the first 20 years of my life on and off steroid creams and, worried that I was becoming totally dependent, decided to go cold turkey. I think it took a week or so for the worst to be over, but for the next 9 years I barely used steroid creams. Then a year ago, I started heavily using them again because I was exposed to cat hair which triggered the eczema. I'm trying the 'cold turkey' method again, using only diprobase cream. I'm on day 4 and my skin feels really awful, but I'm determined to get through it.

    I do have a question though, regarding washing. Showering is seriously uncomfortable. I keep the temperature down, try to be as quick as possible, and apply moisturiser quickly after drying, but my skin is still particularly itchy and sore afterwards. I worry that I'm not 'properly' washing too - I've applied so many layers of diprobase during the day, surely a quick rinse in the shower isn't really cleaning my skin...? Any thoughts or advice would be appreciated smile

    • MissKitty
      MissKitty Lozzle

      Posted

      Hi Lozzle,

      Sorry to hear of your skin troubles; it's good that withdrwawal worked out for you the first time though I am sorry you're having to go through it again. We have quite a few on the forum who are inadvertently doing withdrawal a second time round having not quite realised what was going on the first time! Hang in there!

      Everyone has an individual washing routine that works for them and sometimes this can change for each person depending on the stage of withdrawal they're in. So finding what works for you will unfortunately involve some experimentation and even then you'll probably still not feel very comfortable, sorry. Some people find soaking in epsom salt and cider vinegar baths soothes and comforts  whereas some people find that avoiding all moisturisers altogether helps more. Just try and find whatever works best for you.

      Hugs and best wishes for your healing journey.

      Jo x

    • Lozzle
      Lozzle MissKitty

      Posted

      Thanks for your response! Although it's awful for anyone who's going through it, it really does help to feel supported smile

      So my skin's slowly, gradually healing now, which is a huge relief. The worst part was the first week, and after that I started to try a few different moisturisers. Last year I tried Aveeno (with the green top) and had  a fairly bad reaction to it, but I read so many positive things about it on this website and others that I researched it a bit more. Someone suggested using Aveeno with the blue top ('Skin Relief' with shea butter) and when I used that it was amazing!

      I've been mainly using the Skin Relief shea butter Aveeno since then (about 4/5 weeks) with extra top-ups of Diprobase ointment on my face, and it's going well. I only moisturise my body 2 or 3 times per day, and most of the flaking has stopped. I have an occasional 1 or 2 days flare up, and where my skin is thinner (face, back of my hands and knees, etc) it's taking longer to heal, but the worst seems to be over.

      Although I really dislike the idea of sunbeds, because of the risk of skin cancer, taking one or two short sessions was suggested to me. I spent 3 minutes on a stand-up sunbed in a local sunbed salon, and after a couple of days my skin improved massively. I doubt it's a coincidence, but I'll try another short session in a couple of weeks and see what happens. In any case, if I still need it, I'll take up my dermatologist's offer of phototherapy in a few months.

      Thank you for all the suggestions and advice on this forum, as it all helped soooooooo much in getting through this!

    • aysha44584
      aysha44584 Lozzle

      Posted

      Does diprobase oinment contain steroids or is it steroid free I need a oinment for my skin
    • Bellla
      Bellla Lozzle

      Posted

      The PH of water is actually incorrect for people with skin conditions. Diluted apple cider vinegar can help this. However in TSW anything can make it worse. Moisturiser withdrawal is necessary during TSW so it could be the cream not the water for you. Some patients do have to stop washing until healing begins.
  • gastricity
    gastricity MissKitty

    Posted

    Hi Miss Kitty,

    I have been using Hydrocortisone cream on my face for 2 years now. I suffer from aquagenic urticaria and was initially prescribed Hydrocortisone to help with the itching and burning (they didn't know what it was). It took years to get a proper diagnoses and now I'm taking a suitable dose (very high dose) of anti histamines to control it. Unfortunately I've not been able to stop using the Hydrocortisone on my face. I have seen a couple of dermatologists and they say I have rosacea, now been given all kinds of face washes/creams/antibiotics etc... All of which have not worked and coming off the cream seems impossible (because every time I tried it hurts)! Only tonight have i found out about TSW (from my determined google searches/research) and i want to cry. I've finally worked out what the problem is! Now I'm petrified to go cold turkey and overcome this problem (I understand this is now my only cure) as advised by ITSAN.

    What I really need to know from anyone on here that may be able to advise is who can i see in London to help me through this process? Can anyone recommend a Dermatologist who is experienced in this field?

    So grateful for any advise anyone can offer really xxx

    • MissKitty
      MissKitty gastricity

      Posted

      Hi gastricity,

      Thanks for your message. I'm so sorry to hear of your skin troubles. Hydrocortisone can be used in short bursts on the face but 'red face syndrome' and 'steroid rosacea' are known risks of long term use.

      From my FAQ page: 

      Because topical steroid addiction syndrome has only relatively recently come to the forefront of awareness around the world there are only a handful of dermatologists or GPs that have stayed with patients long enough to see the withdrawal through to completion. I am some others are currently trying to work with what you might call 'the authorities' to try and address this issue in the UK for the future but at present I'm really sorry to say that I am unable to name anyone specific. Try and work with a local GP (though this may mean switching a few times if possible to find one that is willing to be patient and supportive of your decision).

      Sorry I can't be of more help. Get involved in the online support community as emotional support is paramount.

      Hugs x

    • gastricity
      gastricity MissKitty

      Posted

      Hi Miss Kitty,

      Thank you for your reply. Your very supportive and I'm extremely grateful for the encouragement you provide us with. I'd love to help in some way with regards to communicating with "the authorities", is there anything I could do?

      I'm really suffering at the moment and I'm only 2 weeks in. I'm really angry that I wasn't pre warned of the dangers of addiction to these creams and the fact you can buy Hydrocortisone over the counter infuriates me further! In this day and age you expect every single medication to be stringently tested and approved, and the "authorities", (NICE in England) have a responsibility to ensure we are at minimal risk. The fact that extreme usage of potent steroid creams used on highly absorbant areas could potentially be fatal is absolutely astonishing! Whilst I'm sure steroids have a place in medicine, it most certainly shouldn't be dished out so freely for skin conditions like eczema, cancer and asthma inhalers etc I can understand, but eczema or a few bumps from a rash! Gheez this is just utterly beyond belief!

      Arrgghhh! Rant over!

    • aysha44584
      aysha44584 MissKitty

      Posted

      Hey misskitty why I'm I flaring up every week I'm getting fed up how long does this last for
    • MissKitty
      MissKitty gastricity

      Posted

      Hi gastricity,

      Is there anything you can do? Yes - wait it out and look after yourself whilst you get better! Then when you're better you can tell your story :D

      Hugs x

    • MissKitty
      MissKitty aysha44584

      Posted

      Hi aysha,

      Sorry to hear about this. Everyone is different so the flaring could last weeks or months or go up and down the whole time for ages yet. I wish I had something more encouraging to say but it just takes a really long time. I'm over two years in and my feet are still a little pink... it just takes a really really long time sorry. All the best with your healing journey - get some support and look after yourself.

      hugs x

    • aysha44584
      aysha44584 MissKitty

      Posted

      Thanks hun its itchy just want it to be over and done with
    • Bellla
      Bellla gastricity

      Posted

      Dr Rapaport takes on patients all over the world and is the best option. Just bare in mind he doesn't know everything about excema.

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