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

6 likes, 82 replies

82 Replies

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  • Posted

    Shay 0708 's comment above is perfectly sensible and would be something to consider 

    • Posted

      Every single specialist says otherwise. Good luck though!
  • Posted

    Here are some tips to cope with Red Skin Synderome I would handy:

    a) Wear comfortable cotton clothes to avoid itching.

    b) When itching begins use soft, wet towels to reduce the itching sensation.

    c) A heating pad is known to be useful when you have aches and pains.

    d) Use icepacks to remain cool. Try to stay in cool environments and avoid going to places where the temperature is too hot.

    Hope these tips give you some degree of releif.

    • Posted

      Hi Jane. It's very kind of you to reach out

      Just to note,

      With vasodilation, heat would make it worse.

      Also some TSW/RSS patients find getting the area wet makes it worse, but this is a person by person thing

      God bless

    • Posted

      Thanks for the tips Jane. I agree that heat pads can relieve pain, but also itch. Some people prefer ice.

      Warm baths, if tolerated are lovely too. There's a tendency to want to go too hot with water as its so relieving, but be careful you don't scald or damage the skin.

      Some people have had significant relief from wet wraps, keeping dry skin areas feeling moist and cool.

      It can definitely be trial and error though!

  • Posted

    Hi. I recently found out about the withdrawal symtpoms from cortizone. Been using it for about 10 years and the eczema has been more and more stubborn. Now i get it on more places and it looks like pinches. I'm trying to build up to courage and determination to quit cortizone and have a few questions:

    1) Can someone better describe this RSS ? Do you also ofen have pinches inside of the eczema or is it just red dry and flaky ?

    2) Do you remember how much it took for this red skin syndrom to take over ?

    3) Is the red skin syndrome a certainty after quitting cortizone ? are there cases of people who quit it and did not get this problem ?

    4) What other symptoms were you having when you quit using cortisone ?

    • Posted

      Hi Livi

      Dr Rapaport has a blog in RSS and there is a forum and info resources at the Interbational Topical Steroud Awareness Network. There are also Facebook support forums if you decide you want to try and come off.

      Not everyone becomes addicted to topical steroids. It can be pretty quick or a few months before the inflammation spreads, if it does. Best be prepared though - it can be disabling while it's going on.

      With every best wish.

  • Posted

    I have just sent this to another suffer -

    I know what you saying it is a mentally horrible.

    In my job I  shake hands everyday.

    I did read on this very  site one person uses sea salt which they rubb in with warm water & just wash off.

    I too have this strange sore peeling dry  skin which cuts very easy on my hands.

    I  thought I would  give this a try & I have started washing my hands in this  SEA SALT ( got to be  sea salt) once in the morning & once at night ( or sometimes when I feel like it at weekends)  & though it's early days I have seen an improvement , my hands seem to be a lot better.  

    I still use a coco butter hand cream during the day ( but not as often as I used too ) .

    It may or may not work for you but give it a try.

    I just bought a sea salt grinder full of the stuff from Asda for £2.00.

    Good luck i hope this works for you !!

  • Posted

    This is for everyone here. I've had extreme irritant contact dermatitis (super hypersensitive skin) on my face for decades which results in the exact same symptoms - red, burning, inflamed facial skin. So while it's not exactly the same, I'm going to recommend many helpful things you ca do to REDUCE YOUR OVERALL INFLAMMATION while you are waiting for your skin to bounce back, to keep it hydrated and create a good protective barrier. I am sorry for those on this forum who cannot use Vasoline as it is extrememly effective, if you don't have a sensitivity to it, it truly is the only way to go. If you can't use it, you'll want to use a *single* ingredient moisturizer or oil - once a formula has more than one ingredient in it, an emulsifier has to be used to "mix" them - it is often this emulsifier which is adding significant aggravation to your angry skin. So stick with natural oils if you can't use Vasoline. Jojoba is supposed to be closest to natural human oils... coconut oil is a good second choice, some people like olive oil.. etc. Next tip, WASH YOUR FACE AS LITTLE AS POSSIBLE - this allows your natural oils to build up, providing the barrier your skin needs while it heals. That advice is straight from a dermatologist although I would strongly advise each of you to fire your dermatologist and don't ever return. I will provide links to *knowledgable* physicians who have actually studied the human body and what is required to reduce overall inflammation. Not washing your face too often is especially true for those of you trying "nothing" on your skin to avoid stripping it of the oil that is there. I only wash my face when I wash my hair - I can go a week sometimes (I am super clean and shower off daily, your hair and your face do not need the same). I only use Neutrogena FRAGRANCE FREE glycerin soap. It is as mild as water and rinses off super clean leaving no odor, doesn't "strip" the skin of all your oils. I wash my face in the shower after rinsing off all my shampoo (that residue can irritate your skin). Then I apply a thin layer of Vasoline to wet facial skin - don't dry it off, the water mixed into the vasoline really seems to improve hydration. It is easier to do this at night because you will feel and appear "greasy" for a few hours at least.Okay... moving on from topical treatments, the best way to reduce your overall inflammation while you get through this is internally. I am LAZY - would not listen to people for years telling me to address diet/etc. But of course it makes a huge difference. Rather than try to explain everything here, please google Dr. Eric Berg. He had countless (each one only a few minutes but highly informative) free videos on youtube on how to reduce inflammation. One simple observation is iodine. This may be the reason rinsing with sea salt is having a beneifical effect for you lately. Iodine supports your adrenal system. Your adrenals are what produce your own natural cortisol, so anything that can get those functioning better will help your own anti-inflammatory process recover. He has a lot of information on adressing your adrenal system. Also another quick tip that comes to mind, that I learned from Dr. Berg, is that omega 6 fatty acids increase inflammation, while it's only the omega 3 fatty acids that reduce inflammation. If you watch enough of these videos and educate yourself on how to address inflammation from all sides, it could hopefully make your recovery process less severe. Other personal tips would be that working out/sweating can really get a face flushing red so walking (lower impact type exercises) will probably be less aggravating to your face for the time being. Also obvious stuff like spicy foods, alcohol and too much sun should be avoided or lessened for now. Also with the shower, do NOT use hot water and avoid steam also. Warm water is totally fine. If I think of some other tips I'll write again. In the meantime I send you blessings of strength, patience, peace and healing.

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