Side note : You may want to grab a big drink as this is a long blog post!
I can not believe that it’s been 3 whole years since I last used a topical steroid on my skin! Having used topical steroids on/off for over 20+ years to ‘treat’ my eczema, let me tell you, stopping was by far THE best thing I could’ve done for me and my family. Now don’t get me wrong, going down the withdrawal route is not for the faint hearted. It’s brutal. Hell in fact BUT I’d do it all again just to be where I am today. And where exactly is that? Well, let me explain where – 3 years into my topical steroid withdrawal journey.
The past year (Year 2-Year 3)
Over the past year I’ve seen so much healing! For the whole of Summer 2021 I lived a normal life of a 30+ mum of boys who loved life, fashion, skincare and G&T’s! Utter bliss. I literally had the best skin I’d had in years! If you’ve followed my journey to this point you will know that my first year of withdrawal was pretty mild. It was only my face that was really affected but fast forward to around 18 months TSW and BAM!, the full body flare started and hit like a ton of bricks. Stress of a global pandemic, homeschooling two little ones, potty training a toddler as well as having an almighty allergic reaction to the bamboo in the garden is potentially what caused the major flare but as with this condition… who knows ! To read this chapter (1-2 years in) of my journey (including what I did to help manage my skin daily) head over to read ‘Topical Steroid Withdrawal (TSW) – Approaching 2 years steroid free and ‘Skin update – Post TSW pictures‘ and then pop back here when you’re done.
What have I done in the past year to help my TSW healing journey?
I left my skin alone as much as I could
In the past year my skin has changed drastically. I started 2021 with red, sore, burning, dry skin that covered almost my whole body. I had the typical TSW ‘red sleeves’ on my arms which itched so badly! During this phase I tried to leave my skin alone to allow it to heal as best it could. Whilst I didn’t commit to No Moisture Treatment (NMT), I did substantially reduce the amount of moisturiser I was using which really calmed my skin strangely. Moisturising during the ‘red skin’ phase would often make it angry and whilst we were in lockdown I figured that I’d just allow it to be dry in the hope that it would start to produce its own moisture after years of consistent moisturisation (which was something the doctors and dermatologist would always advise me to do). At the time when the skin was excessively dry and wrinkly (in the ‘elephant skin phase’), I never saw it ever getting better. I thought that it would forever be dry and crepey forever. The wrinkles bothered me but they go! They do, I promise!!
I found huge relief in bathing regularly in natural bath salts. I’d often lay in the bath for hours enjoying the moments of relief that the softened water brought. I also got used to the dry, tight feeling on my skin after getting out which improved and lessened as the time went on. I did have a couple of skin infections (Staph related Folliculitis) which was a real pain to get rid of which required antibiotics and was a real low point for me. Just when I was making progress it felt like a real kick in the teeth. One of the down sides of not being able to control the urge to scratch whilst being in lockdown and not being able to have my gel nails on unfortunately.
How UV Phototherapy helped my TSW skin
I was due to start UV Phototherapy in Jan 2021 but due to Covid, it was postponed which looking back was actually a blessing. In the January my skin was sore, red and very dry and therefore I don’t think it would’ve been able to tolerate the level of UV. Generally my skin loves the sun. I never burn and often find the sun helps clear my skin so I had high hopes for it helping so luckily by the time it was rescheduled (for April 2021) my skin was a lot more stable and as a result responded really well to the treatment.
By the end of the treatment (July 2021) my skin was the best it had been for years. I’d got a lovely golden glow (a nice side effect of the treatment ;)) and my skin barrier was intact. At this point I didn’t just have ‘ok’ skin, I had REALLY nice skin!
From here on in for the rest of 2021 my skin was pretty good. A far cry from where it was at the beginning of the year.
How is my skin today at 3 years TSW?
Today as I write this my skin I’d say is a 9/10. I’ve had a couple of allergy flares which have taken a little longer to recover due to it being winter here. With the cold air outside and the warm dry air inside caused by central heating, my skin is drier than it was in the summer but that said, we’re seeing hints of spring which means if I’ve been able to make it through a winter without it flaring too badly it’s progress. I have a few persistent patches of eczema which are slightly annoying but manageable.
How my mindset has changed having gone through TSW
Before going through TSW I would rarely leave the house without my makeup on. I used it as a mask; to cover the sore skin lying underneath. A small patch of eczema would bother me! These days I often go make-up free to do the school run. I no longer cover up my eczema patches on my wrist or neck. I own it! I have eczema and allergies but they do not define me! Recently I’ve had allergic puffy, sore eyes and therefore haven’t been able to wear eye makeup either. I’ve not even tried to hide the fact that they are how they are; instead I’m of the mind set that ‘You know what, yes! My eyes are flaring! They will get better and until then, this is my face! Deal with it!’ I decided I was no longer going to make myself look better just to please others at the detriment of my healing. Not any more!
‘GET COMFORTABLE WITH THE UNCOMFORTABLE!’
Someone in the TSW community told me to ‘Get comfortable with the uncomfortable’ and when I thought about those words and really absorbed them, something switched! I no longer saw my skin as something I needed to hide. Instead I told myself that I was poorly but that it was temporary, that this pain and suffering was temporary and that the uncomfortable feelings I had were also… temporary! It helped hugely!
I went through the worst of my flares during the Covid lockdowns. It meant I didn’t have to see anyone but with that it meant I didn’t see my support network. Noone (except my husband and my mum) really knew the full extent of what I was going through so when the lockdown restrictions lifted and I was loads better, people didn’t know about the healing and suffering time in the middle. This was quite hard for me to deal with to be honest. It wasn’t anyone else’s fault but they hadn’t seen how ill I had been therefore didn’t know the support that I needed. Thankfully I had support online from people in the TSW community.
If you are experiencing TSW, reach out and speak to others who have been through it. Searching the #TSW hashtags will bring up 1000s of accounts of people who are in the same boat. Seeing others’ success stories helped me greatly.
What’s the best thing to come out of going through TSW?
The best thing about having gone through TSW is for the past 8 months I’ve been able to LIVE MY LIFE the way I should without being held back by my skin and without my skin being my first thought! Always! Do not get me wrong, I do not have perfect skin – I still have patches of eczema and I have allergies which affect my skin but they are manageable with the right skincare products, self care, support and mindset. The unpredictability of the red skin phase associated with topical steroid addiction has gone. The burning, the excessive dry skin, the inability to regulate my body temperature, the sleepless nights, the intense bone-deep itch. All that has gone. Instead I have a few small persistent patches of eczema on my left wrist, my right hand and the creases in my neck. Those I can deal with. It has meant that I’ve been able to be fully in the moment with my family. Not to constantly be ruled by my skin.
I pulled the control back and am forever grateful to those online sharing their TSW stories as without them I’d still be in the vicious and needless cycle of steroid use.
Things I did in 2021 that I’d not been able to do before TSW:
To end I thought I’d share a few of these; Things that I did last year once I’d healed from TSW 🙂
You will get there too – I promise!
- Go camping – We took the kids camping. We slept in a tent and every morning I’d literally get up and go. My skin was stable; glowing in fact. My skin was not something I had to worry about at all instead we just had fun!!!
- Spend time in my garden without breaking out in hives– We moved house and now have a lovely big lawn! Granted I know my skin is hugely affected by my allergies, mainly pollen and that the immunotherapy that I am on (Grazax) is helping immensely, but as my skin wasn’t flaring, the barrier wasnt broken so pollen wasn’t getting into my body. It just wasn’t a problem at all. We spent many beautiful evenings in the garden which I’d not been able to do before.
- Wear knitwear next to my skin – This may not seem like much to some but honestly I’ve always loved fashion and clothes and over the past year especially Ive been wearing cotton tracksuits! I’ve had to wear cotton basics underneath almost everything to sit next to my skin but not this year. A small win and another reminder of how things have improved..
- Get hair extensions – I’ve ALWAYS wanted to have hair extensions as my hair is so fine (related to steroid use??/stress of going through TSW?Possibly?) and due to always having a sore itchy scalp, have never been able to. The shampoo you had to use would always irritate, Well this year my scalp is clear and so I took the plunge and have loved having mermaid hair. (I also use an Allergy UK approved haircare range too which is perfect for my hair and scalp!). I figured after the past few years I deserved a treat.
- Work with brands – I’ve grown in confidence since having skin freedom and as a result have been able to work with some fabulous brands on my blog and instagram. Definitely something I’d never have had the confidence to do before TSW when my skin was so unpredictable.
- Get back to singing – I love singing and have always been told I have a talent. I’ve lacked confidence over the years; my skin to blame for most of that but recently I’ve started singing again and even uploaded a few bits to instagram … Here If you fancied having a listen!
Your may be reading this and asking ‘ How long does Topical steroid withdrawal last?’Sadly there is no real answer. Some fly through the process whereas other take longer. It all depends on how long topical steroids were used, where they were used and what potency was used. Everyone is different and so everyones journey is different. All I can say is that If you decide to take the brave leap, and start your TSW journey, be kind to yourself, get your support network around you and know that every day without the steroid you are a step closer to healing and to leaving dependancy behind!
A few useful links that you may need if you have come across my site and are thinking you may have TSA and want to go through the TSW process:
As ever, Thank you for reading and for following my skin journey!
xxx Jem xxx
You may also like: