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My skin today – An update. Topical Steroid withdrawal (TSW) or just a flare?

January 11, 2019 jemma 5 min read 2 Comments
red skin syndrome

My skin today – An update. Topical Steroid withdrawal (TSW) or just a flare?

January 11, 2019 Jemma 5 min read 2 Comments

Since finally plucking up the courage to start this blog back in November, my skin has taken a turn for the worst as I’m currently in the midst of a flare-up. Booo!

I’d just got to a stage where I felt more in control of my skin and then bam! Eczema has slowly crept back and whilst it’s nowhere near as bad as its been in the past, it’s back (thank goodness for make-up!) I’m currently at the stage of the unknown… is it a just a flare from the cold weather/central heating/poor gut health (after the winter vomiting bug over Xmas) or is it another bout of Topical Steroid withdrawal (TSW)? (Read ‘What is topical steroid withdrawal (TSW) here)

Topical Steroid withdrawal (TSW)

Generally, my skin tends to dry out more in the winter months any way particularly as the heating gets cranked up resulting in drier air in the house. (If you’ve not done already, read my top 5 ways to remedy dry skin in winter  blog post.) I’m notoriously bad for not drinking enough water (It tends to be my new year’s resolution every.single.year!) Whilst these factors play a part, this year is different! Granted last year I was enjoying snuggly cuddles with my newborn blaming my bad flare on the crazy hormones post pregnancy but looking back now, could it have been another stage of Topical steroid withdrawal?

Topical steroid withdrawal (TSW) not Pregnancy/hormone related eczema?

In all honesty I think I put my bad skin over the years down to hormones and allergies which I know play their own part but each time I was pregnant, I’d stop using the steroid creams (As I wasn’t convinced they were safe to use whilst carrying my babies) and each time perhaps without realizing I went through TSW. As I’ve said before TSW is only something I’ve learnt about recently since finding it on Instagram believe it or not. There’s a great community of fellow sufferers that are documenting their journeys and helping others along the way. (Just type in #TSW into Instagram and you will find thousands!)

Since learning about TSW, I made the decision to stop! Stop using the steroid creams prescribed to me. Normally no sooner had I seen a new slightly red patch, I’d reach for the creams. (The ones I have vary in strength from low potency to very high!) I stopped slapping it on ‘in case’ a flare was starting. Stopped using them every day alongside my moisturiser! Stopped. T-totalled.

Steroid creams – To use or not to use?!?

Now since it’s crept back a little (on my face, neck and in the creases of my arms) I find myself reaching for the creams as I know that once applied, in a couple of days it will have gone down…. but long term this won’t help me. I’ve been so good at not using them so far but since my recent trip to the doctors (about a lump on my neck – which is also apparently down to my eczema – enlarging my lymph nodes!?!) I had my doubts and found myself contemplating the creams again.

Topical Steroid withdrawal (TSW)
Red patches all over my cheeks, around my eyes and nose
Topical Steroid withdrawal (TSW)
The flare on the crease of my elbow

Finding out about TSW had almost given me hope that one day I will no longer suffer. Once I’ve gone through withdrawal from the steroid creams and am no longer reliant on them, I may just have ‘normal’ skin again. Is this a pipe dream or could it actually happen? It’s that thought that deters me from taking the quick-fix option and putting it on as soon as I have an angry red flare up.

Why has no one ever mentioned TSW before now?

I’ve seen doctors, skin specialists, had allergy tests, light therapy etc but not once had any of this specialist mentioned that I could be potentially addicted to the steroid creams that I’m putting on. Instead of helping my skin could they are actually be making it a whole lot worse in the long run!?! Before I knew about TSW I wasn’t sure if this was something I’d be living with forever. I’d dream of a day that I’d wake up and have ‘normal’ skin. I’d think about being able to hug a friend without their perfume causing my skin to flare. To be able to walk by the perfume aisle in the department store and not have to hold my breath, trying to make sure perfume doesn’t come in to contact with my extremely sensitive skin. Or be able to go out in my garden in the evenings come springtime with my boys without my skin reacting to the falling pollen making my eyes puffy and my skin red and itchy.

Finding out about TSW has given me hope! If I can just persevere and not give in to the medicines that are prescribed that act as a plaster over a huge wound, then perhaps I may come out the other side.

EDIT

*Since I originally typed this, I caved!! I visited the doctor about a lump on my neck. I didn’t even mention eczema. She told me that the lump was due to my eczema/allergies enlarging the lymph nodes. She told me to use the creams to clear it up and then see if the lump goes down. Tbh, had I gone to the doctors on another day, I may not have taken her advice. It was on a day where I’d had little sleep the night before and was feeling pretty sh*tty! I applied a small amount of 1% hydrocortisone! Okay so I know its not on of the strong ones but whilst I’ve woken this morning with a visible improvement, what impact will this have long term should I continue for a week?

So what do I do now?? Carry on with the cream for a week or stop again?!?

Who knows.

We are all on our own journeys, and what works for one, may not work for another. We all have to respect each other’s decisions in our treatment as only we know how it is affecting our lives on a daily basis.

For now, I think I am going to continue use for a week to clear it up and see if this lump subsides.

After that who knows…. But I’ll keep you posted.

If you want to read about my history with eczema and allergies, pop over and read the ‘About me‘ section.

You may also like: Why faux flowers are good for your eczema

2 Comments

  • Brooke Palmer December 26, 2021 at 6:47 am

    Hi, just wondered what ended up happening with your skin after using the 1% cream again? I’m in the same boat as you and about to cave and use it but I’m terrified of the repercussions. I’d love to know if it set off TSW again. Thanks

    • Jemma January 10, 2022 at 12:37 pm

      Hi Thank you for your comment. In all honesty I think using it even for a short period made it worse but that said I was long term tapering for for a long time without realising. At the end of the day you have to do what’s right for you. Im approaching 3 years since stopping. I just knew I had to do it as I wasn’t getting better using it as the steroid stopped working for me. x

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    Nonscents at No.10

    Hi I'm Jemma. Style obsessed Social Media Content Creator and Copywriter. Allergy Mummy to 3 boys. Eczema & TSW advocate. Living dairy and gluten free. Loves singing, shoes, hot drinks. Loathes losing things, cold tea and being itchy! xXx

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