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Thursday, 6 February 2014

End of Week 1. Not pretty!!

Hello to all out there that are also going through the maddening discomfort of all this.

This is the end of my first week of not applying cortisone cream, so so sore. I am swollen, weepy and starting to get crusty above my top lip, around eyes, cheeks and chin; this is spreading down my neck.  Generally speaking I am itchy all over, which is much worse at night but today it is my face and fingers that are giving me grief.  Face stinging like mad.

Though I have been seeing a private dermatologist for about 18mths, this month I have new appointments to see a dermatologist and allergist at the hospital, a private naturopath and then back to my GP. (Plus another referral to hopefully more helpful, private dermo but don't get into see them til later)

Hopefully by the time I get back to my GP I will be able to provide her with some info on what is happening re Red Skin Syndrome and Topical Steroid Withdrawal.  I dearly hope she will be able to support me in this.  Not for the fainthearted that's for sure and this week I already have family and friends telling me I may not be doing the right thing. 

The alternatives are not that great..
  • cortisone medications that don't work (or do temporarily but only due to dangerously increased doses, which result in serious rebounds),
  • skin that is so damaged already as a result of these treatments
  • sitting in light box at dermatologists, with worsening results and burning (though can be helpful for some)
  • symptoms of hives and redness that was not what I originally had with eczema but now have on top of eczema
  • super sensitivities to  what seems like everything
  • immunosuppressant drugs that are prescribed to contend with this
  • never ending cycle

The above is no way to live, and it has severely impacted on my life in any case, so, if opting for something that  sounds like hell, looks like hell, feels like hell...but has an END to it, I am dearly hoping this is it, i.e. TSW.

End of my first week of no cortisone cream                                                7/02/2014


  1. Just to say that the first big step is accepting that the alternatives arent a good way to go and that the only real way is to withdraw . Its painful and tiring and we all go through a real bad time before we see improvements but if there is one thing i can say to you it would .it does get a hell of load better . First few months will be a challenge to say the least but before you know it ,you will be at a point were you know you have done the right thing . I am now 16 months into withdrawel and my skin is the best its been in probably 30 years . GOOD LUCK and keep updating , it does help .

  2. Hi John,
    Thanks so much for the encouragement, I sure do need it. I can't believe how quickly the deterioration happens each day so soon in.
    I'm really glad to hear that you have seen massive improvements, this keeps me keeping on and hopeful.

  3. Hi Caroline . YOU MAY NOT THINK SO NOW but you are starting to heal already , thats what this process is . your body is reacting to the lack of steroids and that in itself shows that the steroids are the problem.
    I had a 5 day break from ceasing the roids to when the symptoms started but i had already been in a series of realy bad flares beforehand . I know how hard it is and thats why you realy do need to take this day by day . Spend some time trying to find things that will help you . cold towels to cool your skin , antihystomines to aid sleep ,i used vaseline all through the withdrawel but look for a kind moisturiser to stop the skin cracking , CUT YOUR NAILS AND FILE THEM DOWN TO STOP RIPPING THE SKIN , warm baths helped , gloves in bed . its a painfull road but there are things out there that do help . most of all though BE SELFISH , i know its hard to just think of yourself sometimes but you realy do need to consentrate on your own health whilst you go through this . some time in the future , when your skin is normal again , you can find the time for others , but for now think of number 1 .
    good luck and hope the healing continues .

    1. Thanks John,
      All good tips for sure.
      My biggest problem aside from itchiness and being so sore is the absolute lack of being able to sleep, even with antihistamine. I guess things will settle eventually and I am sure you are right that the body is going into overtime to help heal itself, good luck to you too as it seems you are out of the woods now.
      thanks again

  4. Hello and welcome to the TSW family. The family we don't really want to be a part of but that we are happy it exist! :)
    I'm from Sweden and I'm also new to this. Today is my 38th day of tsw, I'm doing alright at the moment but gosh I've been a mess as well. You can check out my blog , it's in Swedish, but I have pics on there if you want to see.
    Keep us updated and good luck!

  5. Hi Jo
    Thanks for the welcome and well done on the 38 days. That still seems awhile off for me yet and today my eyes are likes slits, have been awake all night itching and my face and neck in particular are unbelievably sore. Will endeavour to hang in, so thanks for letting me know about your improvement. I will check out your blog.
    Caroline xx

  6. I really feel for you and hope that things get better and you come out the other side. I have come across your blog having decided to get my own face under control. It is comforting to hear other people's experiences.

  7. Thanks Karen,
    Yes, getting to the other side of all of this is what I'm aiming for as the alternative yo-yoing and associated treatments was not helping but increasing my probs.
    Good luck with you and I wish you all the best.
    Caroline x