Red Skin Syndrome re: worsening atopic dermatitis

Posted , 33 users are following.

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

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  • Posted

    Hi

    yes you need to be balanced about steroids - good and bad points

    there are other treatments though for really bad atopic eczema - you might benefit from specialist advice if things are that bad

    Regards

    Dr John Ashworth dermatologistUK

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    • Posted

      Can you give examples of the options? I'm not expecting to get a prescription name, but please give us an idea. The dermatologist has told me if I choose not to use the steroid, there is nothing he can do for my boy. Meanwhile the condition is spreading. Thank you.
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    • Posted

      My dr told me I need an allergist instead of a dermatologist, I'm new here and I just got this news today, have been suffering for a month with this rash. Prior history but I won't go into on this post but yes , an allergist will get to the root of the problem.

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    • Posted

      It is worth looking into gluten sensitivity. I have been struggling for more than 10 years with "atopic dermatitis" until i started suspecting gluten. There is a genetic test that can reveal if you have dq2 or dq8 genes. In my case all other tests for antibodies were negative so against all advice of dictors i started a gluten free diet. After 3 months i started getting better so i thought it was just the topical steroid addiction and it is waning off. Started eating gluten again ... 3 more months of hell. Went gluten free again, things are bearable again. I went off the steroid cream more than 6 months ago and in my case i guess its not topical steroid adiction even tho i have used it for more than 10 uears daily.

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  • Posted

    Hi,

    Thanks for your commend Dr Ashworth. I'd just like to clarify that I'm suffering from a bad reaction to a drug. This is a withdrawal from an addiction to topical steroids, the symptoms of which are very (VERY) commonly misdiagnosed as eczema. Two very different things requiring two very different treatments.

    When my withdrawal is complete I expect that I will still be an atopic individual but with 'normal' eczema (hands, elbows, knees etc). Full body eczema in adults wasn't heard of until the 1950s. Any individual that is experiencing tachyphylaxis (the drug has stopped working and you need to step up to stronger potencies to receive the same effect) would certainly benefit from Googling topical steroid addiction.

    Just for background - every specialist I have ever seen has wet wrapped me in Dermovate, thus perpetuating the cycle of addiction.

    Topical steroids are amazing drugs that can do wonders if used properly and in the short term. However, those that are addicted will only witness worsening skin and spreading, burning rashes.

    Much love xxx

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  • Posted

    The burning and spreading dermatitis which comes with steroid dependant skin is so easily mistaken for eczema though. It's kind of insidious, but strange spread is a giveaway, my back was covered in rashes for while, so unlike normal eczema. Children are not allowed to normally grow out of eczema due to topical steroid

    dependency acquired at some point in childhood. We end up treating steroid induced dermatitis with increased potencies of steroids. Doubt if the younger derms these days have ever seen the natural progression of

    eczema without steroids, so they just can't recognise the appearance of steroid induced rashes. The

    withdrawal is difficult, estimated to last from 10-30% of usage time. Well worth it for those who recognise the symptoms, but shame it's fully avoidable with education and awareness.

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  • Posted

    What you describe sounds exactly like what I am suffering from. I've been using topical steroid ointments for 40 years to control my eczema, and it kept getting worse and worse and the ointments got stronger and stronger. Now I am off all steroid meds and the rash is much much worse but doesn't look like any eczema I ever had. I am hoping that it will heal eventually on its own.
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  • Posted

    Skinmiz, long term topical steroid users are clearly more likely to develop steroid induced dermatitis, but a dependency can form within 5 days. The number of children withdrawing from topicals on support sites is testimony to this.

    Good luck if you decide to go down the withdrawal route, there is plenty support if you need it online for this, as the withdrawal progresses it gets tough as the rashes spread to areas never known to have eczema or steroids.

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  • Posted

    Hi MissKitty, as mentioned before, steroid and cortisone creams are no good for your health. You should use natural conditioners and creams. I had a similar problem and I discovered a cream called Coresatin. My friend gave me a sample and then I bought it. It is steroid free. Blue and yellow coresatin creams are the best. try this and let me know about the results.
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    • Posted

      Hey are you sure that product doesn't have any steroids I haven't used prescribe steroids in yrs but been using this Chinese cream for two yrs think it wasn't herbal coz I'm coming out with rashes
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    • Posted

      Hi Aysha,

      Sorry to hear of your skin troubles. I have two suggestions about the Chinese cream for you to think about:

      1) There have been reports in the news of various imported products that do not properly note what ingredients they contain and some have been found to contain steroids despite not being labelled as such.

      2) Maybe there is something in there that isn't a steroid but nonetheless your skin isn't happy about. Perhaps a mild allergy or irritant for you?

      Let us know how you get on.

      Hugs x

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  • Posted

    Hi Emilco, thanks for your comment. During addiction and withdrawal the skin can become incredibly sensitive to anything and everything (many false positive will be discovered when looking for the 'hidden allergen'). Most people just go with Vaseline for the extreme dryness. Time is the only healing factor here.

    I'd just like to clarify for anyone else reading this discussion that I am not anti-steroid. I appreciate that topical corticosteroids have a brilliant place in treating inflammation and improving lives. However, in some small minority of cases, an addiction will have been misdiagnosed as worsening or chronic eczema. Anyone whose life is in a disordered state of misery with their skin right now who has received no helpful advise so far can look into Topical Steroid Addiction can see if they fit the bill and get their life back (like I now have).

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  • Posted

    Hi everyone,

    This discussion forum is very informative. Does anyone have recommendations for a good dermatologist that possesses experience with steroid withdrawal symptoms, preferably based in London?

    I myself have been withdrawing from topical steroids for quite some time now.

    Many thanks smile

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    • Posted

      Hi ami4,

      I hope you are well. I hope you don't mind me asking but I came across this discussion board after searching for a London based dermatologist that has expertise in Steriod withdrawal/red skin syndrome.

      Did you manage to locate anyone? I've had no luck so far.. Even if you have a recommendation of someone located outside of London, I'd be so greatful.

      Thank you,

      Hannah

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