Monday, 1 July 2013

Topical Steroid Withdrawal Insanity

Today I had the morning from hell. I can't even begin to exemplify how much pain I was in. I ended up going rather crazy, enduring moments of actual psychosis because I couldn't stop scratching, I couldn't stop hurting, and I couldn't get any hot water to relieve my torment.

Somehow during the moment of sheer insanity I managed to snap some photos. The camera has made them look quite tame in comparison to how I actually was. My skin was yellow from dry ooze yet weeping near-constantly over skin that had gone rock solid like botox. It was a pretty grim sight.





The rest of my body is covered in softer red blotchy skin, bar my arms which are like leather and show the typical bright white palms versus the red arm, shedding like crazy. I think the reason I'm not bright red all over is down to the antibiotics.

My wrists have swollen today. My Mum instantly drew to the conclusion of cellulitis but it's not edema based, they've just lost their definition. Suppose it's from over scratching and wearing tubegrips. The weeping on my face is slightly odd in that I look as though I'm completely covered in grazes but that's where the skin has been weeping. I haven't scratched these areas so the graze is a bit scary.

Luckily I now have 3 days to recover til I'm next needed at work so I hope to God I start seeing some improvements somewhere soon. I know it's gonna take a while seeing as I'm only just over a month into withdrawal but I really need to work.





21 comments :

  1. Ouch.

    Sorry to see what a tough time you are having. The oozy face is all too familiar to me.

    These things can turn around pretty quickly, s hopefully you will get a break soon and be ok to return to work. X

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    1. I hope so too, Louise! Cheers for your comment :) x

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  2. Oh Jenny, that looks sore...You are really having a few tough weeks and fair play to you for keeping us posted. I was glad to hear you are happy with your new dermatologist. Could you phone her for some advice?Hope you improve during the week. Thinking of you, Aoibheann xx

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    1. Hi Aoibheann, lovely to see you :)

      I'm not sure the derm is going to be able to help me any more than she already has... I'm resisting the Ciclo for the time being as in my mind I'm thinking the more artificial substances I give to my body the more my body has to recover from. I hope things start looking up too :( I spent the entirety of yesterday smothering myself in white soft paraffin, woke up in the night to my chest and neck weeping but my face was full of lovely soft peel. I wake up this morning and my entire face has decided to weep too. Can't win.

      x

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  3. Oh boy! So sorry Jenny! It looks so painful. Hoping it passes soon! I have been fortunate with my face - constant redness and super dry - only a few days where it oozed and was horrible. Praying yours clears soon! Maybe it had to do with the EH? Kind of a healing reaction? Just a thought. Either way, do your best to keep your sanity - not easy when it is like this.

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    1. Thanks lovely :)

      I don't think it's the EH any more, I think this is TSW. I've never experienced anything like this before and over the years I've had my fair share of hellish skin experiences... right now the skin is actually tearing itself open of it's own accord. Nothing to do with me scratching at it. It's quite worrying :(

      x

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  4. So sorry Jenny!! I am in my 6th month and I have a lot of flares on my face it won't stop. My eyelids look just like yours. Its hard when you can't control yourself from marring up one's face. You are not alone though. Just wanted you to know that. I am hoping for you to get some relief soon! We don't deserve this.
    Hang in there and try to stay optimistic.

    I am going to try to start meditating when I feel an itch fest coming on to see if I can get some relief that way.

    Good Luck Jenny..and thank you for sharing your blog :)

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    1. Thanks for your comment :)

      The thing is, I haven't been scratching my face :( I've managed to be really good to myself. This is just what it is doing in the night. My skin is literally tearing itself open by itself.

      Hope that works for you and good luck to you too :D x

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  5. hang in there Jenny, hope you get some relief soon, think the face is the hardest part to deal with in TSW, i could wrap up my legs and arms and cover my body in clothes but the face is a whole different story. Sunglasses are great for feeling slightly more cinfident but our lovely uk weathe doesnt grant the availability of wearing them, mind you i still did loads....Thankfully my face changed dramatically at about 4 months off TSW and thankfully has not been bad since. It felt like it took forever but it has made me really appreciate myself alot more...and now i dont even feel the need for makeup like i used to rely on it beforehand...hated going out without at least mascara and blusher, but now i look and really smile and feel confident....This will happen for you too, in time, alot of patience, yes the tears and pain come too, but we just have to take each day as it comes and see that even with these supposed flares and setbacks, infact its a flare closer to healing :)

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    1. The thing is, because I think I've been going through TSW for the last 4 years to some degree and with contracting EH too many times in the past year, I actually couldn't give a damn how the public perceive me. It's not to do with feeling embarrassed about going out in public. I haven't worn any make up at all for the past couple of months (eyebrows and mascara) because I've found that I don't even care if other people think I look awful, I'm not wearing it because my skin can't cope with me wearing it. I'm already well past that stage of caring and because of that I do feel some level of confidence in myself for getting to that point. The thing that's bothering me now is the fact that it won't stop weeping and I'm worried about these "grazes" that are being left behind that aren't even due to me scratching, let alone touching my skin. That's just how it's gone overnight and I'm scared that if it's doing this without my intervention just how bad is it going to become?

      Thanks for your comment anyway sweets , I know you mean well :) x

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  6. Hi Jenny,

    I came across your blog whilst feeling impatiently waiting for this paraffin to soak into my skin so I can actually get up and start doing something! I have quite bad eczema and I know how difficult it is to manage so its a bit of a strange feeling reading about someone with a similar condition to me! I am rooting for you! (And if you find the magical remedy that no-one seems to have found I will shamelessly copy you!) I relieve my eczema with hot water too, which even at 26 my dad still shouts at me for burning my hands! I know the feeling of actually going bonkers when you go somewhere and the have the audacity for the hot tap not to get to boiling point! I have never really wrote on anyones blog before but I just felt a bit compelled to say hello and I hope your skin improves... So there we are! Penny

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  7. just thought I would say.... I used magnesium oil to rid my eczema patch on my leg and recommended it to a couple others. do your research but it worked for me!! at first it will seem to irritate it, burn and itch more! but after a few days it stops!! and begins to heal!!!

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  8. I am losing my mind with moisturizer withdrawal and found your blog. I hope you're doing better. Wow! If you're still around, please show pictures! Thanks!

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  9. I am losing my mind with moisturizer withdrawal and found your blog. I hope you're doing better. Wow! If you're still around, please show pictures! Thanks!

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    1. Hi John, if you go to my side bar I have an archive of posts. Alternatively if you hit the 'home' button at the top of the page it will take you to my recent posts. I am overdue a new one though!

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  10. Hi... just curious, why do you talk about using hot water to relieve this when hot water is the worst thing possible for any skin condition? It weakens the skins natural barrier and keeps pores open which worsens spread of bacteria and deepens infection.. I might be completely wrong but thought was worth mentioning . Emily

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    1. Hi Emily, thanks for your comment. As you can see this post is very old now but the reason hot water is so great is because it gives relief from the all consuming itch
      itch and just feels amazing.

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  11. I was searching google for how to get rid of red skin from my eczema and i just so happen to click on your photo and open up your blog I am amazed at how tough you are and i have eczema around my lips i have had eczema for quite a while now its been 5 years i had eczema on my eye in fourth grade and i just didn't know what it was i have tried literally EVERYTHING i have tried every steroid cream and every home remedy and nothing seemed to work out and i became super insecure about my self around 7th grade and i just hated my self i blamed god and i was just so mad at god for giving me this disease and i came to realize i couldnt do anything about it i just had to keep trying and never give up.my mom has dark spots around her cheeks and is very insecure about it too and she uses this mexican cream and it is organic and natural and we had run out of things to try and she said hey why don't you try this cream your aunt bought me and i just thought it was another thing that was not going to work for me so i did it and the next morning my skin was CLEAR i was freaking out and i really think you should try it its pricy but its natural and saved my life!! it is a mexican cream and its called "La tia mana" they have their own webiste and i really hope this helps you and God bless you!! also turmeric and coconut oil and aloe vera helps me

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  12. Dan - you may want to try witch hazel to dry up your skin. it is considered a great natural remedy and has antiseptic properties. i am also trying to ween myself off lotions which is another cause for skin conditions because the skin quits producing its own natural oils thinking that its not necessary lotions tend to dry you skin even more.

    hope this helps..

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  13. Sorry about your withdrawal that looks painful.
    I am also going through the same thing but less severe only got it on my forehead I am to vain to put pics here . I am thinking of having one treatment of photofacial cost $380.00 after tax not cheap I do not have patience to wait 12 months.
    I hear wheatgrass ointment helps with protopic withdrawals you can google info.
    Also Oolong tea.
    Oolong tea is able to suppress those allergic reactions because it combats free radicals, which is a healing property of an antioxidant. Also, the antioxidants found in oolong are essential for vibrant, youthful skin. Drinking oolong can greatly slow down the aging process, so it's a great anti-aging tool.
    OOLONG tea info:
    http://www.stylecraze.com/articles/best-benefits-of-oolong-tea-for-skin-hair-and-health/#gref


    Wheatgrass for protopic withdrawal
    http://www.drwheatgrass.com/conditions/eczema/steroid_withdrawal/easing-the-pain-of-topical-steroid-withdrawal

    Hope this helps you.
    I hate this withdrawal my forehead has skin holes red looks leathery & thinning skin problems.

    Hope we both heal soon.
    All the best
    Phillip.

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