OK I’ve got a long way to go until my skin is free from eczema and through this topical steroid and Protopic withdrawal journey… but I just realised something.
I am free.
Completely free of topical steroids and Protopic.
I gave up both in February this year, cold turkey and I am not looking back. I know I will never, ever use either topical steroids or immuno-suppressants ever again.
This makes me feel ridiculously happy. Because it doesn’t matter where this journey takes me. How bad it gets or how painful. I will NEVER take steroids again or put them on my skin.
I have welcomed this beast called TSW into my life and he’s signed a tenancy agreement for an unlimited time. He’s not the nicest house guest but you can’t have it all. And he has promised me he will leave one day, when I least expect it. I can’t wait!
I have hope now for the first time. It’s hard dealing with TSW , working, getting out, socialising and just getting on with general life, but I really believe that there is healing at the end of this. Something I never ever believed before.
I have real dreams for an end to this suffering.
Epaderm has been a life saver
And what I know is that I would not be where I am today without the help of Epaderm. My old faithful. It’s not fancy. It’s not glamorous but it’s the only thing that I can put on my skin when it’s flaring.
It took me years to discover an emollient that worked for me, a journey through many inferior creams which just made my skin awful. I’m referring to E45, and let’s not even get started on Aqueous cream, which should never be prescribed to anyone with eczema. Read ‘Aqueous cream is the worst thing to use for eczema’ and Dear E45, why don’t your adverts actually feature someone with real eczema?.
If you have sensitive skin, many of the easy, first prescription options are cheaper alternatives and contain preservatives and other ingredients that can aggravate sensitive skin. Persevere and demand that your doctor let you try different things and emollients are by far the safest option if you have bad eczema as they don’t need preservatives.
Epaderm® is available online, in-store and on prescription. I get mine on prescription and sometimes on Amazon (if I run out and can’t get a prescription organised on time or am away from home). I buy HUGE tubs of EPADERM OINTMENT 1000g{1KG}.
I get through a 500g tub easily every two weeks so it’s very easy to run out. How many have I got through in my lifetime? A LOT! How many during TSW? It must be at least 20 tubs this year so far and counting…
That’s a lot of Epaderm!
nb. Some people go TSW without any moisturiser. For me that didn’t work. For some it seems to be the preferred option. I just felt so dry and itchy and did way more damage to my skin when I tried to go without.
Thinking of giving up topical steroids?
I wish I could tell you that it’s simple and easy. It’s not. But you need to know this:
- I will hurt, and it will take a long time.
- It will end, one day, some day, when you least expect it to.
If only it was a simple as #OneTwoFreeYourSkin
All you can do is be prepared and find out all you can about what the process is and what to expect. Speak to your doctor to let them know your plans. Some are helpful and will support you through this but most if not all will try to get you back onto steroids, because that is the only current solution, according to our medical system.
To find out more about Topical Steroid Withdrawal, visit the ITSAN website and join the Facebook online community groups. You’ll find tips and guidance on the ITSAN website and a whole group of people going through the same thing on Facebook and Instagram.
Be Strong.
I am here. Please get in touch by commenting below or message my via Instagram if you need help, advice or just to chat and I’ll do my best to help. I must stress, I cannot give medical advice. I can only share my experience. Please speak to your doctor or dermatologist, and if you want backup, take information from ITSAN to help you explain what you believe is right for your skin.
There is no cure for eczema. You may always have flare ups and rashes. But rest assured, it will NEVER be as bad as when you were addicted to topical steroids, or when you went through TSW.
I’d love to hear from anyone thinking of cutting out steroids, but who are too scared to take the plunge and also any encouragement from anyone who has made it to the other side…
* This Blog post is part of an official Epaderm competition.
Ruth, you are amazing. Your determination to get through this withdrawal has been second to none. Inspiring! Go girl!
Oh Alison. Thank you so much. I put it off for years thinking I just couldn’t do it and work. Then this year I quit work, took the leap and it was every bit as bad as I thought, and more. But I’m getting there. Certainly able to work, freelance from home, take time off when it’s bad, get outside in nature, walk and run on good days so I am so grateful. Thanks again. And hope to catch up soon. Rx
My daughter had a mild eczema flare up on her hand and Epaderm was brilliant, healed it up completely in a couple weeks. Awesome stuff!
Thanks Beth! I think it’s one of the best out there, but not cheap! Glad your daughter found relief from her eczema using it. And thank you so much for your comment xx
Go Ruth! So glad you’ve found something which is working for you. X
Thanks Louise. It’s a long, painful process, but it’s slowly improving from the first awful few months. I am trying to overcome the urge to scratch at the moment. No mean feat! I am failing most of the time but every little victory is a piece of skin saved.
You sound so positive about your tsw journey and I’m so glad you’ve found something that works for your skin. Aqueous creams were terrible for James too.
Thanks Emma. I do use a kind of cacophony of stuff… right word? But most of the lovely natural creams are too expensive. I romp through it so quickly. So I use the Epaderm for heavy duty every day use and the nice stuff for really sore bits that need healing. Hope James’s eczema is OK. And looking forward to catching up at the weekend. Life has gone MAD! Of course I will have numerous little tubs of epaderm decanted and about my person… LOLS
Ruth you’ve done so much for me. I can never thank you enough, proud of everything you’re doing 🙂
Thank you lovely T. I haven’t finished yet either 😉 We are on a journey too, you and me. I’m adopting me as your aunty for starters. HAHAHA Just know, any journey with me will involve tubs of Epaderm 😉
Epaderm or not, our journey will be fun and memorable for sure xx take care
Total inspiration, Ruth. It’s amazing to have all your tips that you’ve learnt along your own journey!
Thanks Jennifer! Yes if you meet anyone with bad eczema who is using topical steroids,, point them in my direction. Problem is, with skin, we are all different. What works for me might not work for someone else. But there are so many commonalities. I a fast becoming an oracle in surviving eczema flare ups on this TSW roller coaster. See you out running soon. I’m the one with the red face 😉
Loved this post and I couldn’t agree more with what you said (especially about E45) ❤️❤️❤️
Thank you so much Cara… E45 is vile stuff and made my skin so so much worse. I persevered for months using it as the doctor told me I just had to use more! Imagine! We all need to demand better and stop the over prescribing of topical steroids. Thanks for everything you have done, your book was immensely helpful and useful. Even if it did put the fear in me! The pain and suffering is real but you are my hope and my guiding light. Thanks so much for the comment. For those of you reading this, Cara wrote a brilliant book, Curing my incurable eczema.
Keep going strong – I love epaderm along with Aveeno
Thank you lovely. Working through that cook book now too. Eczema Detox. Healing my skin from within. Love you sis.
I’m so glad things are getting better! And I’m sure with your determination it will get where you want it to be!
E45 is horrendous! I agree. It just made my eczema sting and itch even more.
Hi Nina, thanks so much for the comment. Things are slowly, slowly getting better. E45 was like acid on my skin. Horrible stuff. Looking forward to catching up at the weekend…
Dear Ruth,
Thank you soooooo much for all your help and allergy advice. life saver!
Thank you lovely Liz. I can’t help it. It’s a passion…
Until I read your previous blogs, I had no idea that the creams you expect to help and heal your skin (steroids etc) could actually be so damaging . Good luck with your detox, I think you are amazing
No, no one does. They are prescribed like some wonder drug, and to start with the work, but they are just masking symptoms that are never understood or investigated. No one ever sits down with the patient to discuss what might be causing the eczema in the first place. I want to change that. I want to stop these drugs being prescribed for long term use because they should never be used long term. It’s my mission now. Because this withdrawal is brutal.
Your blog is so honest and brave and a huge help to others. Keep up the fight, you look so much happier x
Thanks Em. Not always smiling but I’m trying. It’s just temporary. Even if temporary could be months or years… I have to hope it won’t be that long and time flies when you’re scratching eczema… LOLS
Well done Ruth! So impressive that you are taking control yourself of your skin & your condition
And so important that you’re sharing your insights & journey here with others. You’re awesome!!
Thank you so much. I hope it helps others and prevents people from having to go through this. Because steroids are not the answer to eczema.
Well done Ruth for bringing this to the public’s attention. We put so much on our daughters skin it is worrying. Hopefully this is the answer
I hope she doesn’t have to go through this. I hope by raising this the medical profession recognise the condition and at least support and help others through it in the future. It’s actually costing me a fortune in bandages, dressings, tubular bandages, tea tree oil, epsom sales. But it’s taught me so much about self love, self care, who I am and what I really want to do and to be. Thanks again. I really appreciate the comment.
Had no idea that you were going through TSW. Sounds very hard, you are so strong. It must feel so good having come through such a difficult period. Well done you!
No, it’s easier sometimes to just say eczema. But this is worse eczema then I ever had before I started to use steroids. on my skin. It seemed to be the answer but it’s not. In the long run it’s far far worse and very very painful. But I think I’m more than half way through this. At least I hope so. It’s mostly my hands and face which is lovely as I can’t cover them up, bandage them and hide them away. LOL. Thanks so much for the comment. And when you see me at running club, I’m sweating those bastard steroids out of my skin…
Thank you so much. I hope it helps others and prevents people from having to go through this. Because steroids are not the answer to eczema.
You write so eloquently Ruth, I’m lucky that I came of TS when I was much younger but I’ve still got to use Epiderm regularly. Good luck and chat soon xx Cat
Thanks so much Cat. For the lovely comment. The words are kind of flowing at the moment. I find pain does that. Maybe TSW is going to be the making of my writing career. It’s certainly all taken off since starting TSW.. I’ll take writers block though actually any day. And Gawd bless the Epaderm. This really is an Epaderm love in. AHAHAHA
Ruth I think it is so helpful and inspiring to others how you are sharing this awful journey. You have had such a rubbish time lately, and I hope things are now looking up for you. I wonder if Epaderm would help with a skin complaint I have? I’ll have to show you when I next see you! Love and hugs x
Thanks Mim. You guys seriously have been such a help. You all just accept me as I am and never judge me or comment if my skin is red of flaky. That makes is so much easier, because it is often a real effort to get to running, when my skin hurts. But I never regret it. It’s such a fantastic distraction for me, to run, and for that time I don’t worry about my skin or worry it by scratching. I think it has really helped my recovery to stay active and to put my skin through constant sweating, and the positive endorphins are always a win win. I’ll let you know re your skin complaint. Depends what it is and where it is. I’m not a doctor but I’ll certainly be able to advise whether you should seek medical advice. I strongly believe this always a natural way of fixing everything… with exceptions like penicillin, sometime antibiotics but you get my drift. See you soon. Love you guys. Rx
Thanks for sharing your journey
Thank you Angela. It’s a tough journey and I think all the TSW community need to stick together as there is no other support out there at the moment.
Great post Ruth. Inspirational for others going through what you are.
Thank you Ro. Your support to me is invaluable. I am so fortunate to have such a lovely family to help me through it. Must love. Am actually having a cry reading all these comments. Good crying… it’s just so overwhelming to see all this support. Thank you from the bottom of my heart.
I love following your journey Ruth! You don’t even know the dark times you have seen me through via your Instagram page! I love your honesty and positivity on your journey. I’m also a massive fan of Epaderm, for a good few months on my TSW journey it was the only thing that could soothe me and now in my current flare it’s saved me again!
Sending love and healing to you x
Thank you Lucy! This has made my day. THIS is why I do this. It can be a very lonely and isolating experience but together we can beat this. And god bless Epaderm! Never leave home without. 😉
Hi Ive just started on my TSW journey and I’m finding epaderm or similar paraffin based emollient mixed with ichthamol and slathered on thick is making it bearable under tight silk cotton pyjamas from the doctor. I feel like I will live in these forever! I look forward to reading the rest of your blog xx
Hi Jessica. What does the ichthamol do? Not heard of this. I mix in tea tree and aloe vera for healing when it’s going through the ooze and splitting phases. And I’m intrigued by the silk pyjamas from your doctor. Tell me more! Do they make you hot? I get so hot at night. I am usually a mess of tubular bandages and dressing and just cotton nightwear to try to not get so much epaderm on the sheets too.. That is the only bugbear… slimy sheets in days! Yuk
❤
xxxxx love back at yer
Fond memories of Epaderm smothering with an atopic child! Keep going you…
Ha Ha…..! like a little slippery seal after bathtime. Ha Ha. Wish I’d had it as a child. Me and my sister used to refer to the large tub of cream as ‘stuff’. Ah the memories. Have you been using my ‘stuff’? or Mum, have you put on your ‘stuff’… LOLS
Anything that raises awareness of these issues is extremely worthwhile.
Thank you Rob! I do my best. Hope you’re well? Love to catch up soon. Got lots of questions for you…
Hooray for Epaderm!! Wonderful stuff. Currently using it as an eye cream which can make my make up slide off but I don’t have eczema patches on my eyelids! Absolutely agree about E45 (good god it stings) and as for aqueous cream even my non allergic child reacted to that.
Feeling the love for the Epaderm! I use the gloopy emollient but it’s the only thing I can use at the moment. Thanks so much for your comment. And yes, I’m really not sure what the point is E45 of Aqueous cream. Awful stuff.
Great work Ruth in raising important allergy issues.
Thanks Ade! It’s my mission. I can’t stop! I just want to help more people feel supported, not alone and lost and helpless. It can be a very isolating condition.
I am curious if you are completely healed now and have no more ezcema? It is 6/6/23. I have it around my eyes and it drives me mad. I have used steriods off and on for many many years. Currently changing my diet to see if that helps at all. Lived in texas for a year and I don’t know if it was the humidty, but it was bad. Hope you are healed.
Hi Maggie, No I’m not completely healed, but would say that some of my skin, backs of knees and elbow crease are now ‘more like normal eczema’ and my face is mild TSW, with the flaring cycles of inflammation and excessive flaking, though it’s less painful, way less aggressive and easier to live a normal life while it happens.Topical steroids were the worst thing I ever put on my skin.