If you’re going through Topical Steroid Withdrawal (TSW) or living with active eczema you’ll know how difficult it can be to work out what’s right for your skin. If it’s oozy do you let it dry out? If it’s dry do you moisturise and what should you use?
There is so much advice out there and everyone seems to be diving into moisture withdrawal, but I’ve really struggled with it. My skin gets so dry, sore and painful and when I try not to use any moisturiser everything just deteriorates and I’m in agony. I scratch more and do more damage. I itch more and just cannot ignore the itch scratch call!
So I’ve decided to be kind to myself. It’s OK to moisturise. It doesn’t mean you’ve failed. And I’ve noticed that I’m using less and less as my skin heals.
I’ve also recorded a little video for you here explaining a bit about NMT, my TSW journey and how I’ve been coping with my skin during TSW.
So what moisturisers do I use?
- 99% Aloe Vera with tea tree – I put this on if I think it’s in danger of getting infected, is oozing or weeping. This can sting a bit at first but it eases off and has really helped me cope with my wrists, which were really broken, oozy and hard to heal.
- Epaderm – The only thing I used from the start, all over, after my bath and at night, covering with tubular bandages or bandages to stop me scratching. I find Epsom salt, bicarb and oat baths really helped.
- Balmonds – I find their products soothe and are gentle enough for my very sensitive skin. I love the Rosehip oil because it’s so simple and the tea tree balm on really sore areas. Also their Skin Salvation and Lavender baby balm. Visit the Balmonds website and use code WHATALLERGY for 20% off.
- Lyonsleaf – Another lovely independent brand who grow their own herbs and make lovely ointments and balms. I love their calendular and zinc cream to soften very dry scaly skin and help it to flake off and their new marshmallow balm which is so moisturising.
- I tend to apply Epaderm over the top sometimes when I’ve used Balmonds and Lyonsleaf, just to really slather on the moisture, then I bandage really troubled areas of skin.
It’s such a confusing quandry and I’m always reluctant to offer advice or tell people what to do. I’m not a doctor. But I can share what I do myself.
Just to really confuse things, some days my skin feels so calm and comfortable that I don’t use anything on it at all. Over time I hope that my skin will be able to self lubricate but for now, I’m helping it along as much as I can.
Moisturising is also one of my scratch avoidance tactics as often I find I’m itching because my skin is dry.
I have not been paid to write this blog post. I’ve written about the brands mentioned above because I love their products. They are both independent English companies who have been very kind to me during this awful skin journey. I have worked with both, and you can read my guest blogs here:
- Lyonsleaf – Topical Steroid Withdrawal and skincare
- Balmonds – How to get through TSW: Ruth Holroyd’s Sleep Tips for Eczema prone skin.
Still interested in moisture withdrawal?
You can find out more in this blog, written by Harriet Hammond, a fellow TSW survivor who has been through the process herself. Read How to get through TSW: No Moisure Treatement (NMT)
You can also watch this brilliant video sharing Ahmed’s experience with TSW and NMT.
Possible downsides to NMT
- Hydrate your skin – I feel that keeping hydrated with plenty of water and fruit is beneficial to the skin.
- Keep skin clean – I have tried to reduce the bathing, as the bath was the only comfortable place at one point. I can now just wash the important bits and let my skin do its thing sometimes, but the Dead Sea salt and Epsom salt baths just seem to calm inflammation, reduce redness and keep my skin healing. It’s also important to keep skin clean to avoid getting infections during TSW.
- Fruit and vegetables – I’ve been eating lots of fruit and vegetables to help my digestive system. These foods are moisture rich and will help hydrate the body and are also easier to digest.
- Complicated – I know this is a stupid reason to not do something, but I’m so busy with work and my blog, and writing a book that I’m not sure I can manage counting the water content of everything I consume. I need my life to be as simple and stress free as possible and just feel this would put added pressure on me.
- It’s painful – Perhaps I’m wrong and there is no gain without pain, but living alone and struggling with the pain of the flares, I feel that making this journey more painful is not going to help me. I’m going for self care, learning to love my skin and restful passtimes.
I can see that my skin is healing. I am moving in the right direction. Who knows whether I would heal quicker doing NMT. No one knows the answer to this. So I’ve tried to choose the best path for me.
Have you tried and given up like me? I just feel my skin feels calmer and less painful, especially when it’s sore after a flare and the skin splits open. Sometimes it hurts to open my mouth, so I use balms and emollients to soothe and smooth my journey.
What do you think? I’d love to hear from you guys. Do you do NMT or do you moisturise and what do you use on your skin? I’d love to hear your views on this.
Hi Ruth,
Moisturiser, moisturiser, moisturiser. That’s what the evidence tells me. Finding the one that you prefer is more if a personal choice. I too have always used Epiderm since my babies needed it soon after birth onwards. Only have to use it on minor breakthrough eczema during winter on one of the children now.
All the very best on your journey.
Andrew
Thanks Andrew! I’m so glad your kids eczema has cleared up. That’s great news. I just find Epaderm never irritates my skin so stick with what I know I guess. Then experimenting with more healing products and topping up with epaderm seems to work for me.
Hi Ruth. Going through this TWS journey is an individual path, as you’re experiencing.. It seems like it’s trial and error all the way through and lessons learned, looking back. And trying new products when the old ones aren’t working for the moment. I discovered 2 La Roche-Posay products that I’ve added to my regiment that may work for some: Toleriane Hydrating Gentle Cleanser and Lipikar AP+ Balm. I also use Mustela Stelatopia “Emollient” Cream. It all depends on what my skin likes at that moment. Keep at it. Looks like you’re winning over this.
Hi Beth, It is definitely trial and error! You get to learn what your skin needs. I have tried La Roche posay before, I got a free sample from an event and it was good on my skin but think I’m better with emollients at the moment. But so true, learning to listen to you skin and to love it and nurture it is a huge learning curve. Not looking back though.
Hi Ruth, unfortunately for me i cannot use most moisturisers or emollients as a lot of them contain perfume (allergic to) aloe vera (allergic to) tea tree, rose hip and many others (also allergic to) high quantities of either petroleum or paraffinium also make my skin itch to excess, as you might have gathered i have a lot of allergies which like you can end in anaphylaxis or severe asthma attack. I currently use QV Cream by EGO also the same for washing as i cannot use any soaps. I use the QV cream all over as i have a lot of flare ups and i think at the moment the only place scab or itch free is my front torso.Unfortunately i don’t think i could go steroid free as after every asthma flare i am on steroids for a week at a time and quite often i stop say on Friday by Monday or Tuesday i am back on them as something has happened over the weekend, to try and keep things under control i take 6 antihistamines a day plus an inhaler 3 times a day plus other meds for other problems.
Hi Ian, yes it’s a real struggle with the steroids in both topical creams and inhalers. I have been told that the steroids ingested through inhalers is minimal but it depends what dose you have and whether you are also taking those horrible oral steroid tablets which really mess me up, I can’t tolerate them. I really hope that by all of us going through TSW we can raise awareness because someone needs to find a way to help us get through this trauma. We need to stop prescribing steroids and look for the causes of the problem from the start. Have you ever tried Rhassoul clay to wash? I have found this really gentle on my skin but it is a bit messy!
Thank you so much for this Ruth! Since the beginning of TSW my skin has been more comfortable doing MW. Then I started with Joomo, which seems to have stopped a lot of the flaring but leaves my skin very dry. It was only when I read this blog that it suddenly occurred to me that my arms and neck were itchy because they were dry and my constant scratching was preventing further healing. So I took your advice, used a little bit of oil on my face, neck and arms and voila! Much, much less need to scratch and a bit more healing. I love the look of Lyonsleaf stuff and have ordered some samples – all down to you. TSW is such uncharted territory that it is so easy to become fixated on one single regime when in actual fact, as you say, we all have different skin and its needs will almost certainly change throughout our individual TSW journey. We need to stay aware and flexible in our approach. Thanks to you natural, oil-based moisturiser is definitely now part of my TSW arsenal.
Hi Andrea, I’m so glad this helped. And yes, like you say, it’s a journey and we should try out different things to see what helps. Using moisturiser one day on your NMT journey also doesn’t mean you’ve failed. If it soothes your skin and allows more movement and some relief, just be kind to your skin. And go back to no moisture when you can. It’s so hard. I just felt such a failure as the dryness led to so much damage from scratching. #selfcare #keephealing and I hope you love Lyonsleaf as much as I do
Hi Ruth, was good to read about what’s good for you. Like you I cannot stand the dryness from no moisturising so do try to make myself comfortable. My arms, hands and chest are mainly affected, think it all stems from my hands as I used potent steriods on them for years. For awhile I was using calamine lotion after showering as this calmed my skin down, now I take very brief barely warm baths and now only use the lotion on my chest and legs as they are beginning to flare too. I now let my arms dry and then put castor oil on them, it takes the tightness away and makes them comfortable for awhile. I do have itchy fits which are hard to stop and alot of the new skin which has formed is torn away leaving it weepy. I’ve recently started using ichthotape bandages which give me some relief as when they’re covered they’re protected. But these bandages are expensive, can I ask what bandages you have used? If I could find a cheaper way of covering my arms I would. Thanks for all your advice, it really helps to read about your experiences, I’m only 6 weeks tsw.
Hi Ishbel, yes those bandages are expensive. I’ll be honest, because they end up bloody and horrid I just use the cheapest conforming bandages I can find. I’ve been getting them in my local savers chemists. Also tubular bandages can be good due to the tightness on the skin, but again, the cost money. Thanks so much for the comment. It’s so hard working out what’s working for you and trying things that don’t. It really does just take time and a lot of of it but I believe we will get there if we keep going. Hope you skin continues to heal. My worst areas are face, hands and arms and the backs of my legs are a little itchy. I am so much better than I was though so onwards we go. Thanks for the comment. xxx
Thank you for this post. I felt like I had failed when I reintroduced moisturiser. My body just could tolerate without. I was in so much discomfort it was making me feel ill. I’ve slowly reintroduced it and started to feel a lot better. This post gave me some reassurance I hadn’t failed. I have to remind myself I’ve avoided steroids which is probably the main thing! Thank you
This is hard enough, going through topical steroid withdrawal, why make it harder? I’m going for comfort. Emollient when I feel like it and sometimes not, if I feel OK. I hate hearing that NMT and MW are the only ways to heal because really no one knows. Keep going. You are doing so well.
Hello I am currently struggling with tsw I done 3 weeks of nmt am I literally couldn’t function or sleep with the pain was effecting me so much
I have been 2 days back in emoliont alresy pay based am feel a lot comfier and happier in myself , long as I heal an stay away from steroids am happy even though ppl say nmt is fast way of healing ..
The only place I am not gunna moisture stil is my face as I can cope with that
Hi Luke, thanks for your comment. This sucks doesn’t it, all I can say is you are not alone, although I’m not sure that’s much comfort. I found NMT really hard. I managed to slowly wean myself off but I did it by degrees, small parts of my body at a time, not all at once. It’s so aggressive and painful, I know what it feels like. This blog about paraffin and how bad it is https://whatallergy.com/2023/05/paraffin-is-the-worst-thing-for-eczema/
for our skin might help you find a product to substitute the paraffin for, (if you’re using paraffin) and just do what feels right. If it is agony, moisturise. That’s what I did and I am doing so much better now. I can’t say I’m fully healed by any means but I am living life again, working, going out and sleeping. I am also no longer grinding pen lids across my skin to satiate that dreaded bone deep itch. Hang in there and you will heal. And well done on the face, that was one area I really struggled with NMT, and I still use Lyonsleaf zinc and calendula when It feels inflamed, but not every day.
Hi Ruth,
I’m currently going through TSW and doing NMT, however i’ve found my skin cracking and bleeding a lot around my T zone. I’m on day 12. I went through a cycle of redness, oozing and then dryness and now my skin is looking normalish? But very dry (nmt). Today i caved in as i was struggling with movement and pain whilst talking or laughing (i laugh at everything and now i have to be miserable). So i applied Vaseline for a few hours. I just took it off due to seeing a video on tiktok explaining that if i cave in and use moisturisers then I’m in a repetitive cycle of my skin not healing. So ultimately my questions are, how long was your tsw journey? Did your tsw go better then flare up constantly? What are the stages of tsw and when is it prominent that I’m at the end of my journey? I’ve done some research and research shows that on average, recovery time is 3-5 years for majority individuals. How quick can my tsw heal? Is this just the beginning for me and i have to endure much worse? I don’t know what to expect and most people i ask don’t give me much hope nor tell me adequate reasons or information and it confuses me more.
Thanks, Nafeesah!
Hi there Hafeesah, I’m not at 5 years TSW. I’m now left with mild cycles and can work full time, go out and enjoy life. It wasn’t all bad over the years, often summer was easier and winter not so good. My flares are cyclical, in an itch, red raw stage, then crusting and flaking. But everyone seems to be different. Check out my information page at https://whatallergy.com/tsw/ and read all you can. We are all different and different treatments seem to help different people. I swear by dead sea salt baths and stopped using any Vaseline emollients in year 3 of TSW. I think I went through withdrawal from that too as used to smother on the Epaderm all day long. I hate that you are going through this, and it’s hard to tell how long this might take. I am just about to try red light therapy as my lasting side effect is aging to the skin on my face. Hoping this will continue to heal. Always here if you have any questions, but I’m not a doctor. You can get a consultation with Dr Rappaport. See if you can find a local dermatologist who is sympathetic to TSW. Not easy I know. Where do you live?