It’s a question I’ve found myself googling time and time again. Searching online for answers that simply aren’t there. The reason being is that healing is different for everyone as well as the fact that there is little medical research into this condition to date. There are so many unknowns and so many factors that affect the healing process, that sadly there’s no definitive timeline. Healing isn’t linear and is a term I’ve heard other TSW warriors mention so many times. One week you feel like healing is happening and that good skin is ‘just around the corner’ then bam! Another flare hits you for what appears to be no reason at all.
How long has my TSW journey been so far?
Those of you who have followed me and my skin journey will know that I gave steroid creams the boot back in Feb 2019. Yes, that’s 17 months ago and yes, sadly I’m still talking about it and still suffering. (If you want to check out some of my earlier related posts, check out my previous posts here).
If you want to know what Topical Steroid Addiction is, read my blog What is Topical Steroid Addiction?
To cut a long story short, I’ve used an array of steroid creams and lotions, from low potency to very potent, on and off since a teenager as well as a few brief courses of oral steroids in my late 20’s.
The journey is very up and down!
What I can say is that over the past 17 months, since going t-total and withdrawing from the topical steroids, I’ve had periods of really quite good skin and then periods of horrible skin. It’s been very up and down and because of this it can really play havoc with your mental well being. One minute you think you’ve turned a corner, and you’ve seen the back of your skin issues and that you’ve come through the other side and then you are hit with yet another set back.
Am I one of the ‘luckier’ ones?
Generally, I feel I am one of the lucky ones as my journey to where I am today has been hard but I know others who have had it so so much worse. For me, whether this is relevant or not ( I know some don’t believe in tapering), I personally feel that my journey has been helped by a very long term tapering off the steroid creams. Unknowingly in fact. I came off the steroid creams through each of my three pregnancies. Meaning that over the 5 years (prior to coming off them), I had a good 27 months at least when I was steroid free. (Although during my pregnancies, I went through withdrawal each time not knowing, blaming the pregnancy hormones.)
The fear of infection
Back in January (2020) my skin took a turn for the worst after a pretty bad skin infection (which was a real pain to get rid of.) 3 lots of antibiotics later and it finally went but it left me anxious of it returning and I found myself checking every little change in my skin, fearing the infection was returning. This did effect my mental health. There wasn’t a day that went by that it wasn’t my first and last thought of each day.
It’s not ‘just dry skin’ – TSW effects everything!
Constantly thinking about my skin is draining. Not just for me but for my family. It effects every part of my life. It’s effected career choices (read my Instagram post about that here… -Yes I wanted to be a singer). It effects our plans as a family, our social life. Everything. The only positive that I have had in my mind through all of this is ‘there is an end in sight!’ I’ve seen others come through the other side and am forever grateful to them for sharing their journey, giving hope to others like me.
Lockdown + steroid withdrawal + pollen allergies = a miserable me
When lockdown happened I found myself, like many, stuck at home with my three boys. We spent so much time in the garden getting ‘fresh air’. That’s when I noticed it getting worse. The ‘red sleeve’ that is often described by TSW sufferers appeared on both arms. It spread to my back, chest and my neck and I was frequently coming out in hives all over my chest and arms.(If you click the image below and swipe right, you can see the video of the hives!)
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➰ғʀɪᴅᴀʏ ᴀɢᴀɪɴ➰ But I won’t be sat in my fave spot drinking my iced latte today… 😞 One reason being is that the weather is now 🥶 but also because turns out I’m allergic to that beautiful bamboo… 😩🙈typical!! I know I’ve got a grass pollen allergy and apparently bamboo is similar… who knew?! 🤷🏻♀️ Since lock down I’ve been spending more time in the garden and since we moved the seating area directly under the bamboo, I’ve been getting awful hives and rashes on my arms and chest. (Swipe➡️) Then Had a light bulb moment … and since staying indoors for the past 4 days, my skin has felt so much better!! Not perfect but my god much better! Apparently the #pollenlevels are high because there’s no pollution in the air which the pollen normally latches onto to fall to the ground! No wonder #hayfever is bad at the mo! Gardener is coming today to discuss ripping it all out 😢 Boring post but may help someone!! …Means I’ll be able to get back out there though!! #Smallwins ☀️ • • • Dress @primark Sandals @birkenstock #allergylife #pollenallergy #grasspollenallergy #bamboo #bambooallergy #allergylife #allergyblogger #lifestylebloggeruk #allergymum #allergymumma #miltonkeynesblog #mkblog #friday #hayfeversucks #allergiessuck #hayfeverseason #pollenseason #polleneverywhere
During this time I started using my Led Red Light Therapy lamp which I feel has helped my face immensely – I’ll do a blog on this another time but in the meantime have a look at the IGTV I did below.
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After using this machine for the past few weeks, I wanted to share it with you incase it may help you too. I wanted to make sure it was working before I shared which I feel it definitely is! My face has improved so much. Honestly healing from topical steroid dependency is a long process and time (and no steroid creams!!) is the best healer but this is definitely helping it along. I’m not medically trained. I don’t know all about the technology/science of it al but I know it’s really helping me! So I wanted to share it with you in the hope it may help you too! I’ve paid for this myself. It’s not gifted or an ad. Please message me if you have any questions. I’ll happily share the link with you. 🧡🧡 • • • #tsw #redlighttherapy #ledlighttherapy #redlightledlight #redskinsyndrome #Eczemalife #lifewitheczema #skinconditions #lifewithskinconditions #lifestylebloggeruk #miltonkeynesblogger #miltonkeynes
Bamboo be gone!
Whilst we were locked down at home we decided to move our garden furniture around and settled on having our sofa sat under our gorgeous bamboo. Every day for a good few months I sat out there under the bamboo, not realising that the bamboo was actually making it so much worse. I have a pollen allergy and after my husband made a passing comment, and after another quick google search, found that bamboo produces pollen and it can irritate those with a grass pollen allergy. With that, I stayed indoors the following week to see if it made any difference and sure enough, the hives stopped! A week later, we had it ripped out!
Where am I now?
Since then, the hives have stopped but the raised, inflamed, irritated skin has continued. I think the pollen allergy was happening on top of the red skin syndrome, caused by the topical steroid addiction. It seemed to go through a cycle of being red and inflamed when I applied moisturiser, and then throughout the day would dry out and then become itchy again. The dry skin, which a lot of sufferers describe as ‘elephant skin’ is very real and despite hating the feeling of dry skin, I’ve started limiting the amount of moisturiser I’m using. I feel like my skin has forgotten how to produce it’s own oils as it’s become so dependant on me applying cream all the time. So far, applying it in the morning, after a bath or shower and before bed seems to be working! (Yes I was applying it a lot more than that let me tell you!) Read more on what I use on my skin here …My Top 5 moisturisers for dry irritated skin.
What is a full nights sleep when you are going through TSW?
During the really bad flares (over the past 3 months),the only relief I could get was having a bath laced with Epsom salts followed by my using the Avene xera calm balm* and then before bed a good slather of balmonds skin salvation balm*.
Waking in the night itching became a regular occurrence despite taking 180 mg Fexofenadine antihistamine from the doctors. Ice packs frequently helped stop the midnight scratch fests as did a top up dose of liquid Citirizine – although I’m not a doctor so can’t recommend if this is ok -It just works for me.
Treat yourself to nail extensions. Thank me later!
Stop breaking the skin – Use nail extensions
Being that luxuries like gel nails weren’t allowed during lockdown I was finding that I was tearing my skin to shreds during the night. I’d wake with scratches everywhere. My wrists seemed to be the worst areas and with the broken skin came the fear that the infection would return.
Since the restrictions have lifted slightly and nails bars have been allowed to open, I’ve been and had my gel nails reapplied and within days I noticed my skin was able to catch a break from being torn to shreds. The gel nails allow you to scratch but they are blunt so don’t actually break the skin. Plus they look nice and when you’re skin is falling off, you need all the help you can to feel nice!
Natural healing happens with time
Here’s a few progress pictures of my skin from a few months ago versus now.
I’m not 100% healed but I am getting there! I’d say my face has healed the most. The redness has hugely subsided. It’s still a little dry in places, especially on my chin and neck but they were the areas where I applied the most creams.
My arms aren’t as red and patchy but they are still quite dry. I’m getting there and looking at these pictures makes me realise how far I’ve come!
So, How long does Topical steroid withdrawal last? For me it’s well over a year but hopefully not quite 2! I’m by no means totally healed, I’d say I’m well on my way! My skin has to learn to function properly without the use of topical steroids as well as learn to produce it’s own oils again. And so far, it’s doing a good job in trying!
Could you be suffering with Topical steroid addiction?
If you have been using topical steroid creams for a prolonged period and have noticed a repeating flare cycle, including red and burning skin, I’d recommend visiting ITSAN and seeing if you can relate. They have a wealth of information on the condition on their support website.
Also whilst I’m not medically trained, I am going through Topical Steroid Withdrawal and know the struggles so am more than happy to help where I can, or offer a sympathetic ear.
Feel free to get in touch via my contact form here…
Sending healing your way! xx
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*Aff link however I’ve used these products for a substantial amount of time and only recommend products I have used and that I love.