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Puffy Eyes, Steroid Withdrawal, Weepy Face

Posted , 4 users are following.

HopeAgain
HopeAgain

Help! I have used more and more steroid creams all over my body and when I stop using them the first thing I notice is my eyes get puffy and my face gets these raw spots that hurt. Last time this happened I went to the dermatologist and she said use more steroid cream! She said it was infected. She did a swab but it was not infected.  Can someone please tell me if you don't use enough steroid cream on your face does it swell and ooze and look raw? If I don't use it for 3 days it does that. 

0 likes, 8 replies

8 Replies

  • Bellla
    Bellla HopeAgain

    Posted

    It's topical steroid withdrawal which is also known as red skin syndrome. Going thru it myself. Holler if I can help. God bless
  • shay0708
    shay0708 HopeAgain

    Posted

    My 16 yo boy is going through similar thing. He has been using steroid creme since November and now he get the itchy red eyes, and skin is coming off in groin area. Imagine the pain he's enduring. Just yesterday I took him to a doctor at cedar Sinai hospital. He was horrified to hear he's used it for months. He said these steroid cremes are not meant to be used for more than two weeks. There are non steroid cremes that work well, and with less side effects and don't cause rebound flare ups. He says what he was seeing on my boy was not eczema but the steroids effect from prolonged use. I'm determined to spread the word to warn all of you who suffer from this horrible condition. Please do some research and find one good doctor. There must be one excellent hospital with good reputation to get you off the cremes. Please don't continue them based on this one doctor. 

    He is on oral steroid (ironically) but the doctor says the oral is to heal the wounds without the rebound effects of topical creme. Once he's clearer and not having pain, there are other cremes to slowly help with eczema. Such as Elidel. He says he prescribes his patients that. Not strong steroid cremes for 5 months! Good luck to you.

    • Bellla
      Bellla shay0708

      Posted

      Oral steroids can cause TSW too! Be ever so careful when removing them. As he's already got TSW it will make it more likely I'm afraid. So sorry your son and you are going through this. You're clearly a wonderful mum

      God bless

    • shay0708
      shay0708 Bellla

      Posted

      Good God! Now I'm afraid. How are we ever going to be rid of this nightmare  going in circles. I guess we might have to go through the withdrawals for months until his body is clear of the poison. Do you have personal experience with the oral steroids? Thank you for your post.
    • Bellla
      Bellla shay0708

      Posted

      I'm so sorry you're worried, but completely understand. Before I found out my condition was TSW, I was in such agony, was suffering so extremely, I couldn't face my future if it continued. So when it looked like TSW, although it's horrendous and can take a long time, there is hope because it does end. And the good news is, usually the shorter you've used steroids the shorter withdrawal period you'll have. I truly hope you find hope in this.

      Personally no I didn't use oral steroids nor nasal sprays or such. One can be exposed to steroids in many more ways than we realise

      Unfortunately cold turkey is the best option Google Dr Rapaport, and watch him on YouTube videos, I'll grab you some links as to the best two if it will help. Also join Facebook groups, other sufferers can give advice and show support in ways no one else can. Those around you really won't understand how using nothing on your skin is the only option, they may say "surely you can use something" or "isn't there some doctor who can help" etc. Zero therapy and moisturiser withdrawal (if necessary) really are the only options for TSW. I also use dry pressure dressings which help me enormously.

      I send you love and prayers. You're doing great, your son is blessed you're his mum

      God bless

    • Bellla
      Bellla

      Posted

      I've attached some links here, but links take a while to be approved for posting on this site.
    • Bellla
      Bellla

      Posted

      Ps, one has to wean off oral steroids, unfortunately. Unlike topical which one can remove cold turkey.
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