Diary · Tips & tricks

7 months topical steroid withdrawal

Ooze, ooze and more ooze…that’s what the past month has been in a nutshell. There hasn’t been a single day I was completely ooze-free! The worst parts were the folds of my arms, my neck and cleavage, my wrists and…my nipples. Yes, even nipples can ooze, apparently. And it is a particularly difficult area to treat, that I can tell you! I mean, all my oozing spots were, especially this month, but at least I could do something about them.

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How did I try to manage this persistent ooze-problem? (I say “try” because honestly, my methods aren’t foolproof. Also, what works for me might not work for someone else)

  • No moisturizer: I stopped moisturizing the areas of my body that were prone to oozing. I never applied moisturizer when my skin was actively oozing, because that just seemed counter-intuitive. But I did at first moisturize areas that had been oozing, but then dried up. And that wasn’t the best idea. I noticed that when I stopped moisturizing those areas COMPLETELY, there was less ooze and it dried out more quickly.
  • Dry bandages: When I asked my derm for advice about weeping eczema, she suggested wet bandages. More specifically: a compress soaked in a (desinfectant) solution containing borax, boric acid, zinc sulfate and copper sulfate and bandages over it. It only made my skin worse! I was more itchy, what led to more scratching and because my skin was moist, scratching led to more damage. My skin was literally bleeding. So I went back to what I tried the first time I experienced oozing: dry bandages impregnated with Neo-Cutigenol.
  • Neo-Cutigenol: This is an ointment that desinfects and helps with wound healing. It contains zinc oxide, vitamin A, cod liver oil, chlorhexidine, … . Combined with bandages, it works wonders on broken skin! It also helps in drying out the oozy bits.
  • Nudity: Clothing and ooze don’t seem to play well together. It doesn’t feel comfortable at all to wear clothes when you’re oozing (not to mention gross), and covering oozy skin in general (also with blankets or whatever) seems to prevent the ooze from drying out. Or at least it makes me feel more clammy. So I walked around the house naked whenever I could, to let my skin breathe and air-dry.
  • Bathing/showering: I took a bath/shower daily, sometimes twice a day. Mainly because I felt gross and smelly because of the ooze, but also because it dries out the skin. I started to take bleach baths again, 3 times a week. I don’t know if it is good for my generally ultra-dry skin, but it desinfects and dries out the ooze so… .
  • No scratching: This is definitely the hardest (almost impossible) part but oh so important! Even the smallest scratch is enough to make the fragile skin ooze again. I noticed that many times unfortunately… .

For the nipple ooze, I yet have to find a good solution. Bandages or band-aids never stayed put, and without them, the ointment didn’t either. And even if it somewhat dries out and forms a crust, the crust never stays due to friction of clothing or sleeping. So…I now bought a pregnancy bra (hopefully way more comfortable than a regular bra!) and breastfeeding pads, since breastfeeding ladies have a similar problem as I do. I’ll probably get a lot of baby-related ads on the internet now, but whatever haha. It’s a bit awkward, but if it works: why not?

Apart from the oozing, I’d like to come back to what I’ve mentioned in my previous post: when I wrote that post, I just started my first dose of Ciclosporin, an oral immunosupressant. I’m taking these pills for 3 weeks now, and I’m honestly not sure if they are working at all, as my skin hasn’t improved in my opinion. I need to moisturize less often maybe (although I still shed tremendous amounts of skin), but other than that I see nothing different. Problem is that I can’t really be objective about possible improvements because the oozing caught all my attention. And the pills didn’t relieve that terrible symptom. It was really frustrating actually, because my derm told me you’d see slight improvements after a week already. Even with Elidel, which is a topical immunosupressant – a fucking cream for god’s sake – I saw huge improvements after only a few days. You would expect pills to be much more potent than a cream, right? Some people think my dose (I’m on 150mg a day: 50 in the morning, 100 in the evening), which is based on body mass, may be too low. I’m not sure why it isn’t working for now. Maybe it takes more time, maybe I need a higher dose, maybe it’s just not the right medication for me for some reason? I really hope it will work eventually though, because living like this is hard…I was so down when the oozing never seemed to come to an end, especially with the festivities of Christmas and New Year’s Eve. It’s confronting when everywhere, you see pictures of people dressing up to go party, or having a good time with family and friends, drinking champagne. And I sit there at home, feeling down, limited in my possibilities and uncomfortable in my own skin.

I can only hope that 2017 will be the year everything will change for the better! Something I do not only wish for myself, but for all TSW-warriors and all those who suffer severe skin conditions! Happy new year to all of you ❤

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