Friday 7 May 2021

My Journey with topic steriod withdrawal ( TSW) 5 months in

 For those of you that don’t know, Topical Steroid Withdrawal (TSW)  refers to the withdrawal effect when topical corticosteroids are inappropriately used or over used and then stopped. 

I’ve had eczema all my life, I have been prescribed so many different creams over the years. Every time my skin got sore or flared the doctors prescribed more and more steroid creams which I thought was fixing the problem. Little did I know my skin was becoming addicted! 

I also experience something similar 4 years ago where my skin had all the common TSW symptoms but I hadn’t heard of TSW back then and the doctors kept giving me a new steroid cream each week to put all over my face. When I look back now I’m in shock that this was even allowed.

Fast forward to 2020, I had been using Steroids and my eczema kept clearing after use but as soon as I would stop my skin would get a million times worse again. So I began researching and came across TSW and I just knew.
I was away for the night with my boyfriend when I woke up at 5 am in absolute agony, my skin was red raw, tight, and itchy just from one night without steroids, that’s the day I knew I couldn’t go back.

Lots of people decide to do NMT ( no moisture therapy) or MW ( moisture withdrawal) during the process but I’ve found it too hard for me personally. 

Fast forward 5 months and I’ve been steroid-free every since. When I say they have been the hardest 5 months of my life it’s no joke. I’ve been through hell physically and mentally, I still have a long way to go but I’m healing every day. I know the rest of the journey isn’t going to be easy but if I can get this far I know I can take whatever lies ahead of me. 

What symptoms have I experienced during TSW? 

I’ve had so many of the common hellish symptoms.
- excessive flaking - my skin sheds like a snake. It’s horrible laying in bed and looking at your sheets and your floor and all’s you see is flakes, mentally I’ve really struggled with it. 

- temperature deregulation - this is so hard! One minute I physically can’t stop shaking the next my whole body is on fire. 

- oozing - luckily I haven’t had this as badly as others but my god it’s horrible it comes with an awful smell too. 

Bone deep itch - this can only be described as an itch that is so deep it can’t be touched.

Insomnia - I’ve really struggled to sleep, whether it being from itching or just generally not being able to sleep it’s not fun. 

Red skin syndrome- bright red wrists and hands where I’ve never used steroids before. 

For me, the mental aspect has been just as bad as the physical to have to wake up and go through it every day is mental torture but it does get better! 

How long does TSW take to heal? 

Everyone is different, someday it depends on the potency of the steroids and how long you have used them for but ultimately everyone is different.

What has helped me during my TSW journey?

- Letting myself have down days- there will be many down days during this journey and it’s okay it’s normal, don’t pressure yourself into feeling like you have to be okay every day.

Listening to my skin - whilst the skin goes through different stages it requires a different approach. Some weeks showering is painful others when my skin needs to calm down oat bath and Dead Sea salt baths are heaven.

Probiotics- a lot of us going through TSW have problems with the gut so it’s important to address the issues going on with the gut to help heal the skin. Taking daily probiotics has helped calm my gut issues. 

Sleep - get as much sleep as you can, you’ll need it! 

I will be doing a separate post soon with all the products and treatments that have and haven’t worked for me! 
If you have any questions please leave them below and I will do a TSW Q&A soon! 




1 comment

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