Monday, 26 December 2016

Two Years of Topical Steroid Withdrawal

Hey all!

Just wanted to do a quick update before the year runs out.

First of all, in my last post I wrote about how worried I was about going on a big trip to Europe with my boyfriend. Shortly after I wrote this we both realised that I definitely was not well enough for such a trip yet and we made the heartbreaking decision to cancel and put it off until I am well enough to enjoy it.

In the end it was the right decision as my skin continued to get worse which would have made travelling totally impossible and both of us would have been miserable if we had gone.

However, good news is about a month ago now I started feeling quite a bit better after a horrible flare lasting around six months! Still not perfect, but I've well enough to leave the house and spend time enjoying life much more with less pain and discomfort than I have in years.

The biggest change I have noticed about my current condition is that I'm able to handle the summer heat really well (as opposed to last year where I could barely leave the house all summer).

I am still dealing with significant oozing and crusting on my eyelids which makes it impossible on some days to go out and do things, but my cheeks, which for the last two years have been horrible, are for once the least of my worries and actually look quite normal!

I'm hoping that the relief I am having from my withdrawal symptoms will last, but there's no telling for how long, so I'm trying my best to enjoy it for now!

To finish off, I'll just let everyone know that I also recently celebrated my two years of Topical Steroid Withdrawal. Instead of feeling sad that my withdrawal has gone on for so long (as I often do), I felt quite excited and badass and proud of everything I have done in order to get my life back. 

Anyway that's all for now! Merry Christmas and you'll be hearing from me in 2017!


  1. Sending you love from Alison and us. X

  2. Great to see you are finally have some significant improvements x all the best x

  3. hello, I wanted to ask how you are doing now? My daughter, two years into TSW had to go to the ER for a allergic reaction. They gave her steroids in a shot form. I had to agree. I see she is starting to ooze and flare again. :( how long did you have a set back from the prdisone?

    1. Hi Alisa I'm so sorry to hear about your daughter. I honestly don't know how to answer that question because I never really stopped flaring up until a few months ago. It's hard to say if it was due to the two days of prednisone or if it was just normal tsw. But I'm doing very well currently I'll have to do another update soon :)

  4. Hi Hayley, I pray for your struggle to become healthy again. Can I ask, are you taking a certain treatment for your condition? (e.g. elimination diet, selectively moisturizers, etc) Thank you for response:)

    1. Hi Ashma, no I am not taking any 'treatments' per sey. The thing about tsw is that it resolves itself over time. I have taken some comfort measures over the years but no diet or anything.

  5. When you stopped ts how much for you use?
    I just started tsw (1mounth) and my symptoms seam so mild. I'm a bit scared that my symptoms are just the start. I've been on ts for about 6years but the last year I used ts sparingly and rerly on my face./ ann