Friday, 21 August 2015

Day 251 off Topical Steroids

I'd like to dedicate most of this post to talking about the condition of my face as the state of my body is pretty much the same as it was the last time I gave an update- itchy and red with occasional cuts and sores but not too bad.

For the past few months my face has been following the same cycle pattern every few days. On the day I have a bath I tend to scratch all the masses of dead skin off my face, and spend the rest of the day with burning red and oozing skin and need to have ice packs pressed against my face all day in order to stay somewhat comfortable. By the next day (usually I don't have a bath) my skin has normalised a bit, but I wake up with lots of dried ooze on my face, and also the skin is thick and raised as if preparing to shed.

Between the following night and the next morning, the skin begins to shed ferociously, to the point where I can pull the skin off with my fingers, and there is red oozy skin beneath it. Then the cycle begins again. I have also consistently had two huge lymph nodes along my jawline (the size of large grapes) which have been extremely uncomfortable.

My face has been doing this every two days for months with no relief whatsoever.

A few weeks ago, I was so sick of this cycle I decided to try using a zinc oxide balm on my face (made by the wonderful Stephanie at The Home Apothecary shop on Etsy). After two days using it on my face, all my skin shed off, but was not oozy for the first time since I can remember and I had maybe a week or so where my face improved a lot! For the first time in 8 months I am able to recognise the person I see in the mirror. My lymph nodes also shrunk considerably at the same time.

My face has gotten worse since this photo was taken, the inflammation and size of my lymph nodes has been increasing everyday but it is still a huge improvement upon what it has been like. It still follows the same cycle but to a much lesser degree than it had before and I am still using the zinc balm everyday for comfort.

Going back to before I started my withdrawal, I spent a few months on methotrexate, an immunosuppressive drug (also used for cancer patients) that my genius doctor thought would help my condition. My health, which I was already struggling with, declined even further to the point where my hair thinned dramatically and I lost 1-2 cm of my hairline. Well...

 It has all grown back really nicely and I am sporting a lovely fluffy hairline ! :)

I'm still so far from being healed and everyday is still pretty much a fight to make it to the next day, but hopefully my progress gives hope to everyone else struggling out there.

Hang in there lovelies x


  1. The zinc is good to dry up the wetness and help give some sort of barrier to prevent infection :D it could be just normal TSW doing its thing which is why your lymph nodes are fluctuating in size again. I'm over a year off and am doing heaps better - my lymph nodes in my neck have been swollen for ages!! I guess its just part of the stupid process :(
    Hope the oozing and crazy shedding settles for you soon.