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Friday, 10 May 2013

Red Skin Syndrome

So today I'm in a state of turmoil and curiosity has finally gotten the better of me. I keep getting hounded by people telling me I have this "red skin syndrome" which to those not in the know, is essentially what happens when you've used steroids for years; your skin becomes addicted and completely dependent on the medication.

The typical symptoms of this are:

  1. Red burning skin, hot to the touch, that spreads over the entire body, despite it originating in smaller places with extreme itchiness that cannot be satiated. 
  2. Skin that weeps and oozes.
  3. Eczema type rashes that spread over the skins surface.
  4. Hives/ Urticaria.
  5. Difficulty regulating body temperature with freezing hands and feet and you may often suffer all-over body chills.
  6. Extremely dry skin that sheds like crazy and needs to be vacuumed daily.
  7. The skin is so sensitive that you can become allergic to basically everything.

Now, I'm quite a stubborn person in that when I know I probably wouldn't be able to make something work I'm reluctant to give it a go, however the symptoms are so similar to what I'm going through I'm just at a bit of a loose end.

The only way to stop an addiction is to go cold turkey, no steroids can be administered whatsoever to give the body a chance to recover and cure itself. Many people who undergo this withdrawal find that depending on how long they've taken steroid medication it can take months and even years and years to finally come into remission. They also find that they will need to take a large chunk of time off work because it is virtually impossible to attend.

I'm already fully aware of just how vicious eczema can be as I've spent massive portions of time off from work, university and college in the last few years because my skin is just uncontrollable, inhibiting me from being able to get dressed and even the ability to concentrate. You can see in my archived posts, specifically the ones entitled "Living With Eczema" just what I have had to go through. I'm not sure if I would want to relive all that on a longer term basis because I really have done so much to pull myself out from that pit of depression. I don't want to endure it again.

My only problem is it's been bad enough to try to rebuild my sick record from having all the time off. My employers know the extent of what I go through but I just wouldn't be able to function without my job. Shane and I struggle enough to pay our bills as it is with barely a penny left over to enjoy ourselves, so without a job we'd be in short, screwed.

So this is why I'm in a state of turmoil. I'm not sure I would be able to give steroid withdrawal my full commitment, and I definitely wouldn't be able to give up my steroid inhaler, but I must say that it does seem likely that it is what I have.

At the moment there are only a couple of doctors who believe in it (based in America I think...) and I have mentioned it to my dermatologist in the past but he's just shaken it off. It is only a recent finding so I'm not too sure on the credibility, though no doubt I'll get loads of you telling me that it does work. Yet, if this were the case, why don't more doctors believe in it?

You can read more about it here.


Images of Kelly Palace, before and after, pinched from the ITSAN website.

19 comments :

  1. It's a tough choice to be sure. I have been off the 'roids for 18 months now and the first few months of withdrawals were sheer hell. I was literally disabled, no exaggeration. I am very fortunate that I work from home as there is no way I would have been able to go out to work.

    This is why I totally understand the dilemma that those who go out to work have when it comes to steroid withdrawal. There is a lovely guy who just started a blog about this very subject. He is also considering withdrawing from steroids, but has to work as a taxi driver to support his family. His blog is http://35yearsofhell.blogspot.co.uk/

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    Replies
    1. Thanks Louise :) how is the skin now for you? I've just had to apply steroids as my skin is going downhill and I keep forgetting to cut my nails. Argh! Also what do you do for a living if you don't mind me asking? I'm always intrigued to know what jobs other eczema sufferers do?

      Thanks for the link also! I shall take a look :)
      x

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  2. Hi Jenny
    Thanks for looking me up.
    Have had a quick look at your blog, it looks like you are really going through it!!
    I start my withdrawal from the roids on the 1st July and have been planning this since January.
    It's a strange sense of limbo I am in at the moment, can't wait to get off the roids, all this hanging about is doing my swede in, yet I'am scared to bits!!!!
    I feel for you, as it sounds like you have to work. From the blogs and forum posts that I have read, there are only a few people that have been able to work through it, so that is why I have planned my withdrawal, financially that it!
    I am at work at the moment so I am typing this inbetween jobs so it may not read well, although none of my posts read well anyway, working or not and my spelling is bloody awful so you will have to forgive me!
    If you have any questions, just ask me.
    I may not be able to answer any about the actual withdrawal as yet but am an expert on feeling like crap and how I manage!!
    Good to hear from you and will add you to my favourites.

    Stay positive

    Love, light and peace
    Siegfried

    www.35yearsofhell.blogspot.co.uk

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  3. Hi Jenny,
    I work from home doing freelance writing.

    The hard part for me in early withdrawals was looking after my 3 kids, especially the school run. During TSW, the skin can swell up quite a lot and it was hard for me to walk.

    The good news is that things DID get better. After the initial rebound flare, the skin went through phases of calm and flare, but it is now really good, almost healed. Those dark days are behind me now.

    Quitting steroids was the best thing I ever did, but I'm sad that my skin got addicted in the first place. If I had carried in using them, I think my skin would have stopped responding to them and I would have needed to use orals.

    Lots of people have healed from steroid addiction. That is the good news. We HEAL. There is a girl called Rochelle who writes a blog and has posted photos of her healing, also a guy in Australia called Jake who quit at the same time as me and now has perfect skin.

    BTW, I also have a steroid inhaler and I still take it. I don't think it affects the skins ability to heal and breathing is way more important anyway!

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    Replies
    1. I'm glad it has worked so well for you, as I say it is something I will definitely look into doing in the future!

      I've used orals and all sorts for the majority of my life. The only reason I stopped oral steroids is because they kept making me get eczema herpeticum! I dread to think what is actually going on with my body.

      I found that guy, Jake and couldn't believe the difference. Crazy and so much peel!

      & yeah, I wouldn't be able to live without my inhaler, especially if I had an asthma attack which I have frequently!x

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  4. Did you see Rochelles blog? It is http://curingredskinsyndrome.blogspot.co.uk/

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    Replies
    1. Thanks for the link, Louise. I've seen her Youtube video :)

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  5. Hi Jenny - You should check out https://eczemaexcellence.wordpress.com/ - she's going through the withdrawal now and is about your age, I think, and has had a really rough go of it. Shes talks about all the nitty gritty of withdrawal and I think you could really relate to her.

    Jennifer

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  6. Ahh what a coincidence! I stumbled upon this blog today I think through the ITSAN forum somehow. Thanks to my lovely friend at Itchy Little World for the shout out, and YES I would be happy to discuss or help in any way I can, Jenny! Feel free to visit my blog or email me privately (nubtorious@yahoo.com).

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  7. Hi, I have a neurological condition that impacted work, and I have also used steroids and have eczema- but the steroids were used for a max 3 months total so I have not had this issue.

    I understand about work, if you live in the USA it can be especially scary. I lost my job due to my disability because I missed work. And this was a very large company.

    What I would do is look at FMLA or your company policy on short-term and long-term disability. If you don't have either but can add them in the new year I would wait. This would help you keep your job.

    You can also get FMLA approved as "flex time" so lets say max 3 days out of the week for x amount of time, and see how it goes working that schedule, then doing disability if needed.

    Hope you figure it out, this is terrible and no one should have to worry about their job!

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    Replies
    1. Thanks for your comment :) unfortunately I only work 4 days a week and my maximum time there is 5.5 hours so cutting that down wouldn't be doable! Plus I am so desperate for the money as I don't make enough as it is! Like yours, they're a really big company and my managers are becoming more understanding of my condition but it's the whole money issue rather than anything. If I applied for Disability Living Allowance I'd only get £20 a week which is nothing. My partner also works full time so I'm not eligible for any benefits which is really frustrating as he doesn't make enough to keep us both going.

      Something will come to light eventually, thanks :) xx

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  8. Frustrating! Not to mention how that sounds like a harrowing disability. You know, it may only look that way now, that you're only gonna get twenty pounds for your troubles. But maybe, if the legal eagles hear you out and give you advice, then you might see that there are elements in these statutes which you can use to your advantage, so that you can truly get what is due you.

    ParmeleLawFirm.com

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  10. I just recently found out about this steroid withdrawal i haven't used steroid for week now. I feel so much pain in my neck it hurts dry flaky skin any remedies for this ?? some natural organic ? this is so annoying:( we must think possitive

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    1. Hi Viðar, thanks for taking the time to comment! I'm happy to hear you've ceased using the topical steroids but unfortunately if you've taken a look at the ITSAN website you'll see that it is a horrific and painful journey which for the most part you just have to grit your teeth and get through it.

      There is a wealth of information on the ITSAN forum http://forum.itsan.org/index.php?action=forum where people come together to share things that have helped them through the hard times as well as showing you're not alone in this.

      Hope this helps and I wish you all the best in these hard times!xx

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    2. Yeah I am trying to get signed there waiting for reply . I think my neck is gettin a litle better but still bad,
      Now its all over my hand and feets like hives red/bumps.... I feel your pain through this and I am happy to know that I am not alone you inspire me to hold on.

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  11. Reading your blog has been very enlightening. We have an 18 month old son who since 1 month old has had severe eczema, we were told all sorts of ridiculous things by GP's, HV's and midwifes..the classic being that our 1 month old is just teething and that's the reason we are peeling the baby grows off of his oozing skin. :( We have NEVER used the 'cop out' hydrocortisone creams...because my wife and I didn't quite trust the way that it was all the GP's would advise...we held out and eventually begged our way to an allergy specialist....wheat, dairy,soya,eggs,peanuts, are his allergies...but seeing as though we have cut out these from his diet he still continues to flare so we are suspecting more. Reading about steroid withdrawal that you are going through must be even worse than the original eczema and makes me feel justified in not subjecting our precious boys baby skin to such poisons, which we would have had to have done on a daily basis. Tsk they can spend millions on football/ develop drone killing technology but cannot or will not even address such an issue as common as eczema and other skin conditions. Your blog is very brave and very helpful :)

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  12. I recently quit steroids and am currently two weeks in.. But I'm still not 100% sure if I have TSW? I have no oozing and no flaking, but I have the spreading red skin. The red skin I have is puffy, red, dry, and mostly just on my arms-- I'm wondering if this is because several weeks ago, I put steroids only on my arms. I have these folliculitis-like rashes on my legs and they're spreading quickly. At night, it's not the 'under the skin' itch, but mainly a normal 'I have dry skin' itch, enough to keep me awake. The rest of my skin is a light red, and all these things make me second-guess myself on whether I have TSW or not.. What are your thoughts on my situation?

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    1. Hi Monica, not everyone's symptoms are the same so it can be difficult to tell. Some people don't experience everything either. The telltale signs seem to be that the rash spreads further than from where you initially applied the cream, which from what you've said is what you seem to be experiencing. All I can suggest is that you keep an eye on it and just try to keep as comfortable as you can! If you go on the ITSAN website or find the groups on Facebook there are many more people who can probably help you further.

      All the best,


      Jenny

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