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Topical Steroid Withdrawal – Approaching 2 years steroid free

February 3, 2021 jemma 11 min read No Comments
2 years topical steroid free tsw

Topical Steroid Withdrawal – Approaching 2 years steroid free

February 3, 2021 Jemma 11 min read No Comments

My Skin Today – An Update (almost 2 years in to TSW)

Grab a cuppa, Its a long one!!

With my two year anniversary fast approaching (9th Feb), I thought I’d share a little update. Yes, of course I’d love to say that I am healed but the sad reality of Topical Steroid withdrawal (What is topical steroid withdrawal? (TSW)) is that healing is not linear. Almost two years in, it doesn’t get any easier sharing these images. I’d be lying if I said I wasn’t disappointed at where I am currently in my Topical Steroid Withdrawal journey and that if you’d have told me two years ago that I’d still be suffering with symptoms and that my skin would still be effecting my life , I don’t know if I’d have been strong enough to quit the creams knowing that!

But… I did! I got on with it…One-day-at-a-time! That’s what us TSW warriors do. We have little choice. There is no other option other than to wait for time to heal us. We cope, we adapt, we put our lives on hold whilst we allow our bodies time to heal and undo all the years of abuse we unknowingly inflicted on ourselves through using prescribed medication to treat ‘eczema’ (which wasn’t actually eczema).

Let’s get real!

I don’t want this post to be a negative one, not in the slightest but I do think it is important to highlight that Topical Steroid Addiction/Withdrawal isn’t something to take lightly. Drug withdrawal is huge. Just because I wasn’t ‘Taking a pill’, doesn’t make it any easier. Applying a steroid cream to your skin, your biggest organ for over 20 years has huge consequences. It doesn’t just effect your skin, it gets absorbed into your body! It makes me so mad to think that all this suffering is happening when all I did was apply a cream that was regularly prescribed by my doctor and skin specialist to ‘help’!

Healing does happen with TSW but the length of time that It takes depends on many factors! Age/length of use/potency of steroid/area of use etc etc.

Support online

During the start of my journey, I spent so long online looking for other people who had been through similar, hoping for a quick fix. Whilst I didn’t find a miracle cure, what I found was peoples stories. Genuine people sharing their experiences. And through those stories I have made connections with other people who had been through similar and together we support one another. It really helped me feel less alone especially when doctors and dermatologists didn’t support my decision or when friends and family just ‘didn’t get it’ or didn’t grasp the severity of it, instead thinking it was ‘just a bit of eczema’. It was on Instagram when I started my blog back in Oct 2018 that I first heard of Topical Steroid Withdrawal. A fellow TSW warrior was sharing her story and because of her, I now have a light at the end of the tunnel, so in continuing to share my story, I hope to help/support/inspire others going through similar. It took me 4 months to pluck up the courage to ditch the steroid creams…So here goes… the past 5 months (month 19 or so). My full body flare…

The past 5 months of withdrawal

The past 5 months have been my worst. Unlike a lot of those going through Topical steroid withdrawal, my full body flare didn’t start until around month 18/19. I’m not a medical professional but I link it to an allergic reaction that I suffered for 2 months back in the summer of 2020. Having a grass pollen allergy and being that we were spending a lot of time in the garden (we were in lock down and having three boys who needed time outside), the bamboo that we had in the garden was causing me to have an allergic reaction on my skin and I read somewhere that allergic reactions can cause the body to go into a flare. ( Bamboo is big grass apparently – who knew) I documented some of that in a previous blog post here – How long does topical steroid withdrawal (TSW) last?)

hives on my arm from the bamboo pollen allergy
Severe hives on my arm from the bamboo pollen effecting my grass pollen allergy.

I thought I’d take you back to the beginning of my full body flare to share with you my coping strategies,what I did to make myself feel better, how I treated my skin and then share a few updates as to where my skin journey is up to now.

A full body flare

I’ve never had eczema all over my body. My legs have never been effected yet here I was experiencing itchy red patches of dry skin all over my body. It started from the top of my body and worked its way down. I decided early on in this full body flare that I was going to leave my legs well alone. I’ve never used moisturiser on them so thought I’d just see if I could manage without applying it. Best thing I could have done for them. My legs cleared up really quickly. The red patches subsided within a matter of weeks. They remain dry but not to the extent where they are flaky and still I leave them well alone.

tsw red skin syndrome legs

My arms, wrists, neck, shoulders, top of my back and my face have been the most stubborn and sore areas. And whether it’s linked or not, these are the areas that I applied topical steroids the most.

Don’t sweat the small stuff

For as long as I can remember I’ve never been one to sweat. I am one of those people who could get away with not wearing deodorant and still smell fresh as a daisy! But OMG! Going through TSW and ridding my body of all the crap and toxins, giving my body chance to function properly without steroid has meant that I now sweat!! Yep! I never thought I’d be so happy to be a sweaty betty! Not so great that my body gets a little allergic to it but hey, let’s celebrate the small wins! Well done body! Another step closer to healing!

My daily routine whilst my body flared

In the early days of my full body flare I was bathing daily. It was the only thing that bought me some kind of relief. I was using both Dead Sea salts and oats in my bath ( in a pouch regularly squeezing the oat milk out – these are the pouches I use ) to soften the water. Both helped to calm my skin however upon getting out the bath I was applying lots of moisturiser and I mean a lot. I’d reapply throughout the day which looking back wasn’t the best thing to be doing. Through these weeks of this routine, my skin was red raw. Cracked and oozing in places. (I used Sudocrem on the cracked patches.) This was a really tough time for me.

Sleepless nights going through TSW

During the night I could barely sleep. Those I follow online going through similar describe the itch as ‘bone deep’ and I can confirm they are not wrong!! I would wake scratching my skin yet it didn’t matter how much I itched and scratched, I could not stop the feeling. I just wouldn’t subside. Gel nails helped so much at the phase as luckily when I was scratching, I would hardly break the skin as the gel nails were blunt. I tried taking antihistamines to help reduce the itch but as it’s not a ‘histamine based itch’ it wouldn’t help. The itching is apparently down to nerve damage as well as the blood vessels widening so I found that taking paracetamol before bed would help.

Too hot / Too cold

Getting hot in bed made my itching worse. This was September/October time so the central heating was on drying the air inside and it was cold outside so I needed a blanket on but found it a fine line between being too cold and too hot. I could barely regulate my body temperature at this stage and was constantly swapping between hugging a hot water bottle and a cool pack. (Another symptom of TSW). Clothes irritated my skin so I found sleeping with a thin cotton sheet around me under a duvet was the best thing. I wrapped the cotton sheet between my torso and my arms and tucked it between my legs so that there was little skin-on-skin (avoiding me over heating and sweating.)

Stopping the scratching

I discovered tubular bandages which really helped my arms heal. I would cut them to fit the full length of my arms and loop them over my thumbs to stop me getting to my wrists and arms easily. I’d wear them underneath long sleeved cotton tops throughout the day and then change to a fresh set and fresh cotton top to sleep in as my skin healed. Wearing them meant that my skin had chance to heal without constantly being scratched. I still wear them now and genuinely feel like they have contributed to my healing greatly.

Moisture withdrawal

As someone who has moisturised religiously since being a teen, who had always been told to ‘keep my skin hydrated’ and who would panic if my moisturiser was out of stock in the shop, the thought of stopping this process filled me with dread. I’d seen so many others online having success by limiting the use of moisturisers as well as limiting baths/showers, both of which I was doing/using regularly. Despite their success, I just felt that I couldn’t do it! There was just NO WAY! Then one day a switch flipped, and I just decided I’d try it. Instead of cutting it out completely, I told myself I’d just ‘reduce’ the amount I was using and would go from having a bath daily to one every few days.

The early stages of Moisture withdrawal

I went almost a whole week before I caved and had a bath. My skin had gotten so flaky, I felt I needed the relief. The warm bath water mixed with the dead sea salts and oat milk was just what I needed to soak off some layers. I’d gotten myself so worked up and in a panic about how my skin would react getting out the bath without applying moisturiser however, I was so surprised at how it coped. As soon as I’d got out the bath, I gently patted my skin dry and instantly applied a few blobs of Sudocrem to the really cracked parts on my wrists and elbow creases, whacked on my tubular bandages, my cotton top and went to busy myself before I thought too much about it. And honestly, It was not any where near as bad as I’d expected.

That said the initial days of moisture withdrawal on the whole were hard. I’ll not lie but trust me when I say, IT WAS THE BEST THING I DID FOR MY SKIN whilst it was going through the red and angry stage!

Reducing moisture reduced redness

After a few weeks the redness subsided. My body calmed and gradually the skin healed. It is still healing. I’m not out of the woods yet but that said, whilst my skin still causes me issues, I am able to go out, I am able to manage it and am not thinking about it 24/7. ‘Elephant skin’ and wrinkles is prevalent on my wrists, shoulders and elbows which will hopefully be helped by UV light therapy which I should be starting soon.

I am still using moisturiser on my face and neck and uncoincidentally those are the areas that I am still experiencing redness. My face has had a few flare ups lately from allergic reactions (to nuts – a new one for me ) but I am finding it increasingly easier to identify TSW flares and allergy flares. I keep a food diary which helps me identify any patterns and flare ups related to foods.

What I use/used during TSW.

The following items/products are what I am currently using as part of my routine.

I recently answered a few questions that some of my Instagram followers asked me in relation to my TSW journey. Feel free to watch it here…

What my skin is like now…Progress

tsw red skin syndrome legs

TSW is a process… It takes time!

I really hope you find this post useful. I know every one says that it takes time, but honestly it does. I’m hopeful that there could well be a time when I will no longer have to worry about my skin! I am due to start Immunotherapy for my grass pollen allergy soon which should help reduce the number of allergy flares I get too which will have a big bearing on my overall skin journey. Here is hoping that helps too!

Going through TSW can be a really lonely time. It pushes you to your limits, puts strain on relationships and effects every part of your life but let me give you some hope…healing happens. It can be a long road for some… but you will get there!

xxxx JEM

You may also like :

Balmonds has been a great help in helping to calm my skin. It’s 100% natural, Steroid free, entirely free from synthetic perfumes and colours, petrochemicals, parabens, phthalates, propylene glycol, SLS/SLES, PEGs, methylisothiazolinone (MI) and methylchloroisothiazolinone (MCI) and is also cruelty free and vegan friendly.

Blog post contains some Affiliate Links however please be confident in that what I have shared I use and have found success with.

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Nonscents at No.10

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

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