I’m now nearly six months into my journey with topical steroid withdrawal (TSW) so I thought I’d share the top 20 things that have helped me to get through this difficult time. They’ve all been gleaned partly from my personal experience but also from friends on social media who are also going through this or those who have succeeded in cutting out topical steroids successfully. I can’t remember who recommended what so apologies if I’m stealing your hacks! Sharing is caring though… right?
- Social media has got to be number one. I read so much before starting this journey, both on the ITSAN website, Facebook groups and Instagram. The ITSAN Facebook groups have been really helpful. Just post a question and this community will reach out with their personal experience or advice. With no doctors supporting this it’s been invaluable. I mostly use Instagram though and my favourite TSW warriors are: @DrRuthSkinJourney @TSWSteph @TSW_Hollybee tsw_beezeebuz @myatopicskin @amarahowe @carasnextchapter. There are so many more brave men and women sharing their stories. Search, follow and share!
- Glass nail file – Keep your nails short. I find I can do untold damage on a skin fest if there is a sharp or long nail in residence. I use a glass nail file to get the best, smoothest results. They are relatively cheap to buy and are also better for the environment as they last forever so prevent the waste of emery boards. I think I have TSWSteph to thank for this one…
- Moisturise – I know some people cut out moisturiser as well as steroids but that’s a personal decision. I found that if my skin was dry, not only did it hurt more, and itch more, making me feel more anxious, but it also get infected more. It’s up to you, do your research and find something that works for you. I use Epaderm ointment, tubs of the stuff. I probably get through a 500g tub every fortnight.
- Get a Prescription Prepayment Certificate – if you need other meds like I do this really helps save money. I wrote about this a few years ago after I worked out just how much I saved each year and no I don’t get commission for selling these 😉 Read, How I saved hundreds with my Prescription Prepayment Certificate
- Heal your skin – I also find Balmonds Skin Salvation helpful on my legs and the Tea Tree Salve so soothing and healing on the really nasty bits. If I could afford to just use this stuff all the time I would, it really is the only other thing I will put on my skin when it’s in this fragile state. I use this and then pile on the Epaderm for the heavy duty moisturising job. Hopefully one day my skin will be strong enough that I can nourish it just with the lovely, natural goodness of Balmonds emollients. You can get 20% off every order using my Ambassador code: WHATALLERGY. Visit their website today to order at www.balmonds.co.uk
- Regular baths – A life saver! I am probably getting by with about 3-4 long baths a week; not great for the water bill but I really can’t cope without these baths. I listen to podcasts or audible books and just relax, exfoliate and gently remove all the flakes, mostly from my face and neck. Part of my weekly self care regime.
- Tea Tree Oil – I always add Tea Tree Oil to my bath and also use it on really sore, damaged bits of skin. I’m sure it’s the reason I have not had any bad infections. I’ve had mild infections which I’ve treated myself by using tea tree oil and bandaging up my skin.
- Epsom salts – in my bath really helps my skin to calm down, heal and it always feels smooth and hydrated afterwards. I buy massive tubs of Epsom salts online to save money. Check out Amazon: Elixir Gardens ® EPSOM BATH SALTS | 5KG BUCKET/PAIL/TUB | 100% Organic Finest Quality | Magnesium Sulphate
- Tubular bandages – It’s such a simple solution but it really does help. I think it’s the pressure, I buy the small for my arms and wrists and medium for legs. They need to feel a bit tight to help stop the itch. I use them at night to stop me scratching and they are nearly always still in place in the morning, unlike gloves which I quite happily wrench off to have a good old scratch. They also helped when I had really bad ‘zingers’ which is the term used by TSW survivors to describe the nerve pain you can get. I had terrible stabbing pains in my right forearm which kept me awake at night and even made me question the safety of me driving, so jarring and painful they make me twitch involuntarily sometimes. I buy these elasticated bandages pretty cheaply in my local Savers and wash them after every use. The don’t last forever but they’re worth it to prevent damage to your skin at night. Sadly the don’t make head shaped ones or body shaped ones of I’d just climb right into a giant tubular bandage…
- Cooling Mask – this is quite freaky and any cool pack or cold object would work. The beauty of this mask is that it moulds to my face and stays really cold for hours. I usually put a layer of material between the mask and my skin as it’s just too cold on its own. This helps me get through day and night sweats and those times when the skin is just ridiculously itchy.
- Wrist Bands – the skin on my hands and wrists seem to be the worst and taking their time to heal. I bought these wrist bands and they really help when I want to go out but hide they skin as I’m very self conscious of how it looks, and also to protect it when the skin is angry and broken. They are bamboo wrists bands but they look smart and I don’t feel uncomfortable or embarrassed to wear these.
- Fingerless gloves – I bought these lovely fingerless gloves from Amazon. They are sold as arthiritis gloves but they allow me to still work. These help in the day time to protect my poor hands. They never get a rest from constant food prep, hand washing and daily chores.
- Silk and Cotton gloves – I have a selection of gloves that I wear at night when I’ve slathered on the Epaderm for a deep treatment and sometimes they stay on all night. Usually though I’ve ripped them off at some stage when I get hot, which I tend to, every night… very hot!
- Fan! – This will also help cool you down at night. I am getting a lot of sweats which may also be the peri-menopause but don’t help with the skin as sweat stings and causes me to touch, rub and aggravate my skin. I have an air purifier fan from Dyson and also another one that really blasts out the cold air. These have been a godsend on muggy nights.
- Hygge head bands – Pronounced Hoo-Gah! These headbands are just beautiful. I have really tried to remain active because running and walking gives me a huge sense of wellbeing and is a fantastic distraction from the itch! These headbands really help to mop up excess sweat and so keep my cooler, comfortable and less itchy. I also love the designs. They have a deal on at the moment, Buy 4 pay for 1 – what’s not to like? Visit: https://hyggebands.com
- Balhvit Cooling towel – This helps me stay cool in the bath and also after a run. You just soak it in cold water, spin it in the air and it is sooo cold and cooling. On hot days after a run this is a must because I don’t cope well when it’s really hot. I got mine here: Balhvit® Cooling Towel, 40″x12″ Ice Towel, Microfibre Towel For Instant Cooling Relief, Cool Cold Towel for Yoga Beach Golf Travel Gym Sports Swimming Camping as Cooling Neck, Headband, Bandana (Blue)
- Cutting out alcohol – I have done this because I am also taking Methotrexate but I know that alcohol is a huge dehydrator and irritator of my skin. It’s hard to do, but really will help. I do have the odd drink but only once or twice a week and only one drink. It’s been hard because wine and gin were my rewards for having such hard time with my skin, but this could really help.
- No Processed Foods – This is also tough and I do have some times when I break the rules, but there are some ingredients in processed foods which just make my skin itch. I also cut out tomatoes and celery because they also irritate my skin. Some say food doesn’t play a part but it could do, certainly for me it does. I am also allergic to nuts, dairy, wheat and soya so I am already avoiding all these. Cooking from fresh and eating natural home cooked meals helps me, and I enjoy cooking. I am also going out far less so I have time to cook, batch cook and freeze meals.
- Tweezers – These serve a dual purpose. Firstly I use the blunt end to scratch. It sounds bad and it is sometimes slightly too sharp, but it’s the best thing for really getting into the centre of those un ignorable itches. I find that a few minutes with the tweezer and I can calm myself down and move on from the itch. Normal scratching on the other hand can just get way out of hand and descend into anarchy! I also use them to gently tease off the big flakes that are ready to fall, since I have no finger nails so use. It also helps me clear off the facial flakes if I need to go out, without scratching.
- Cotton hankies – My eyes have been streaming with hay fever and with the ooze on my eyelids. I have found that soft old fashioned cotton hankies really helped. Much better than using tissues which seem too harsh. It’s also better for the environment. Wash daily!
- Mindfulness – This should really be my number one. I subscribed to the Calm app and cannot go a day with listening to my Daily Calm guided meditation. It’s just ten minutes of your day to try to sit, accept the itches, let them be, let them itch and try to calm your breathing, relax your shoulders and slowly become less anxious. Sometimes I feel like I’m really bad at it. I have to scratch numerous times during my practise but it gets easier. First thing in each day is my favourite time to sit. I love doing it and learn something every day. Check out this blog that I wrote a while ago when I first started exploring whether I could stop myself scratching…
https://whatallergy.com/2018/03/mindful-scratching-could-this-help-eczema/ and if you fancy giving Calm a go, I can give friends a 30 day free trial. Tap me up and I’ll get you set up. All I need is your mobile number or email address.
I hope that some of these help and wish you every success in your journey with eczema or topical steroid withdrawal. We can beat this guys, we can learn how to live in calm and peace and not let our skin rule our lives. As I wrote this I realised just how many little changes, tweaks and hacks I had collected around me to help me get through this. It started as a list of ten things and you’ve ended up with 21! Because I always remember something else at the last minute… and can’t think of another nine now!
Do you use any of the above? Please share your special TSW or eczema life hacks below. I’d love to hear from you.
It looks like you have tried so much already! I have dishyrdrotic eczema only on my fingertips, but as you can imagine, fingertips get used a lot. What I’m trying is oral collagen capsule supplements to see if it will help to heal the skin structure from the inside.
Only about a few weeks now, but I seem to have much less cracking and splitting and bleeding (-really frowned upon at work).
I thought I would pass that along to you. I’ve just glanced at your blog, I’m not familiar if you’re vegetarian or vegan, so of course that’s a consideration.
I wish you great success on your journey.
Interesting, I’ve not tried this. Hope it works and I’d be interested to hear whether it does. Our skin is so complex isn’t it? and different for each and every one of us.
Ruth – your tips are great! Here’s some of mine::
1. Avoid surrogate scratching. What I mean is if we resist the urge to scratch, our subconscious will find alternate forms of relief. Examples include towel rubbing when drying off, aggressive application of moisturiser, or any other practice you find yourself engaging in that is just damaging your skin.
2. Taurine. I’ve read that the red skin is due to uncontrolled release of Nitric Oxide from the skin’s endothelial layer. Taurine is a powerful anti-oxidant that will help mop up excess Nitric Oxide and take the edge off both the red skin, but also the temperature regulation problems we’ve all experienced when coming off topical steroids. I dissolve 1 gram of taurine powder in hot drinks several times a day as it’s essentially tasteless. This was a game-changer for me, as it allowed me to go much deeper into TSW while tapering off the stronger creams without the worst of the symptoms (the strongest cream I’ve used for the last 4 months is hydrocortisone 1%).
3. Use less moisturiser more often. I use the smallest amounts of moisturiser I can that leaves my skin feeling better, and apply it again as I feel my skin start to dry out and become itchy. If I put too much on, it just leaves my skin feeling greasy and horrible, which is almost as bad as dry and itchy.
4. Don’t neglect your diet. Love your gut. If you’re eating stuff that upsets your gut, don’t be surprised if your skin reacts the same. I’m not coeliac, but my skin likes me a whole lot better (for example) if I don’t eat wheat. Everyone’s different but the mantra is the same, crap in, crap out.
5. 3 minute showers. Every minute you spend in a nice hot shower might feel great, but it’s stripping moisture from your skin. I’m in and out of a luke warm / warm shower in 3 minutes tops. When you dry yourself afterwards, make sure you don’t engage in surrogate scratching with the towel (Hint #1) and get that moisturiser on before you dry out too much (Hint #3)
6. Sleep when you’re tired. As you go deep into TSW, don’t be surprised if you become a temporarily night time insomniac. As you can imagine, this isn’t great. Take your sleep when you find it. In my experience denying sleep during the day when you feel tired does very little to improve your sleep at night. Your sleep will right itself as your hypothalamic–pituitary–thyroid axis gets used to you not rubbing exogenous hormones (i.e. steroid cream) into your skin most days.
Thank you Richard! These are fantastic, particularly sleep when you need to because night-time doesn’t seem to be a time for sleep during TSW. So odd. How is your TSW journey going? It’s actually great to hear from a bloke! I know men are going through this too but I see predominantly women contacting me. Hope you are in a good skin place.