Read me if you: have eczema, are looking for eczema treatments which work, are considering using a prescription steroid cream on your skin, have red skin syndrome, are in topical steroid withdrawal, are looking for eczema treatments to help your teenage son/daughter.

What It’s Really Like Living Through Topical Steroid Withdrawal: Aka red skin syndrome

In Skin Conditions - Help by Cheryl Woodman MChemLeave a Comment

Read me if you: have eczema, are looking for eczema treatments which work, are considering using a prescription steroid cream on your skin, have red skin syndrome, are in topical steroid withdrawal, are looking for eczema treatments to help your teenage son/daughter.

Imagine you wake up one morning with the ability to grow chocolate from your ears. Wow. Yum. Give me some. You don’t know whether to be excited or ridiculously freaked out. You’ve never met anyone who can grow chocolate from their ears. This is weird.

You go with it for a few days. Free chocolate is free chocolate ‘eh.

Then you realise the weight of being a free chocolate making machine.

Kids stick to you like glue.

You have to sweep up chocolate every 2 minutes – because your dog’s allergic (!)

Every time you get hot, chocolate begins melting down your shoulders.

People have even started to lick you.

You go to the doctors. You sit down. You cry. Am I going to have to live with this for life?

Your doctor says no. We don’t know exactly what causes ears to make chocolate but we do know if you use this cream it will go away.

You feel relief, happiness, gratitude. You run to the pharmacy and get prescription #1.

Everything’s fantastic for years.

Then one day you wake up and your pillow is chocolate stained. What!?

You use more cream. It helps.

But same happens a month later.

You use more cream. It helps again.

But same happens another month later… and this time more cream doesn’t help.

You feel trapped. What can I do? Is there another cream I can use? At this point chocolate begins pouring out your ears.

You visit your doctor. You find out you’re in Anti-chocolate withdrawal.

The same anti-chocolate meds will no longer work for you. And because you’re now in withdrawal things are going to get worse before they get better. You will be making chocolate filled swimming pools before you can sleep without chocolate pouring out your ears.

What once helped now makes things worse.

Dear reader. This is the essence of red skin syndrome aka topical steroid withdrawal. And I use this cute analogy not to make light of red skin syndrome but to make it stick with you. Red skin syndrome is something everyone should be aware of before considering, using and continuing topical corticosteroids.

Using a prescription steroid cream for eczema comes with risk of red skin syndrome. Using a prescription steroid cream for eczema as a life-long solution comes with extreme risk of red skin syndrome.

Wondering what is red skin syndrome? What is topical steroid withdrawal?

Today thanks to the beautiful Zai – a lovely lady who has had eczema since childhood you get a direct insight into what red skin syndrome is, what red skin syndrome treatment looks like, what to expect, how to deal and where to turn. Vital information. First hand experience. Words of warning. This is real. Come read more…

Read me if you: have eczema, are looking for eczema treatments which work, are considering using a prescription steroid cream on your skin, have red skin syndrome, are in topical steroid withdrawal, are looking for eczema treatments to help your teenage son/daughter.

Zai, it’s so great to have you here. And thank you so much for coming to share your experiences with us today. I know from being a follower of yours on Instagram that you’ve had and are still having one heck of a journey with eczema and, red skin syndrome and topical steroid withdrawal. Could you tell us a bit about how it all started?

It has been a heck of a journey but I feel like I’ve had two journeys: my eczema and then withdrawal.

My eczema started from before I can remember. I’ve had it all my life and it would come and go but as I got older I felt it was getting worse, to the point it was on my face. I’ve been on steroid cream pretty much my entire life and essentially they just weren’t helping. After making videos on YouTube, someone mentioned “Topical Steroid Withdrawal” and after googling it, my whole life changed and I started my withdrawal journey almost a year ago, on November 6 2017.

Wow… and I can see in just a year you’ve come so far (!) When you were on steroids for eczema did you use them continually or where you given advice to use them with on and off periods? What were the results like in the beginning in comparison to when you decided to go cold turkey?

When it comes to steroids I can say I used them continually. I was told I would be on them for the rest of my life, and they were on available on repeat prescription from my doctor so I rarely had a check up on my skin. I can’t tell you how many tubes I went through.

From what I remember, the steroids worked a lot better when I was younger. If I had a rash, I would apply the cream and within 1-2 days the rash would clear. I just never really took note that they would always come back! It just didn’t seem to matter because as long as I had the cream there, I could get rid of the rash. As I got older my eczema started spreading to my neck and face and I noticed my skin was sometimes sore, and also the rash would just never fully clear.

Oh gosh – I can only begin to imagine how worrying that was for you. Around this time did you go back to see your doctor? Where you given any advice about diet and nutrition or alternative treatments? Did you notice any patterns with what caused your eczema to flare up?

I went to see my doctor 3 days after stopping my steroids. By now, my neck was incredibly red and sore and my face was beginning to dry up and flake. The first thing I said to him was “I don’t want to use steroid creams anymore, they are just not working.”

He looked at my skin and asked if i had used anything different, soaps, make up or hair dye i said no. I told him this was always happening regardless of what I eat/do. He never talked about diet/alternative treatments and to be honest, I know what foods I am allergic to and so I stay away from them.

At the end of the appointment he gave me a prescription for Trimovate cream – it contains steroid. I left with the prescription but threw it in the bin. I’ve never been back to the doctors since.

Just listening to you describe that last appointment – yikes – you must have come away wondering what the heck to do next (!) Where did you turn to? Had you heard about red skin syndrome or topical steroid withdrawal before deciding to stop?

I never heard about Topical steroid withdrawal until I decided to stop. Someone commented on one of my YouTube videos about it and I googled it. Everything just clicked and I decided to stop using the creams there and then.

After that doctors appointment I was just very angry that my doctor wouldn’t listen to me and he never really was going to. I just decided to do it alone with no medical help.

Go you – hugely brave! So step 1 you decided to ditch the steroids – what happened next? How did your skin react? What did red skin syndrome/topical steroid withdrawal look and feel like for you?

The day I stopped using steroids my skin was already very sore. My neck and the space between my brows was so tender and inflamed. And that’s when my skin became extremely dry and started flaking. About 2 weeks in my entire neck and chest was bright red/purple and very very painful. Turning my neck was torture. The redness on my face had spread all over in large patches. By 1 month my whole face was red/purple.

 

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25th November: Day 20 The red is spreading! #TSW #TopicalSteroidWithdrawal #ITSAN #RedSkinSyndrome  #EczemaAwareness #RSS #Journey #YouTube

A post shared by Zai (@tsw_beezeebuzz) on

The skin would constantly ooze, dry up then shed again and it would repeat. My eyebrows fell out and I could not sleep at night because of the discomfort… and the itch was so intense.

I was lucky that it was mainly only my face, neck and chest that were affected my the withdrawal. I don’t think I could have gone through with it if it was my whole body.

Wow – you’re a superstar for sticking through all of that. Topical Steroid Withdrawal – things get worse before they get better. How did you deal and manage with these hugely-not-pleasant TSW symptoms? And how long did these cycles go on for before you started to peek light at the end of your red skin syndrome tunnel?

I didn’t really deal with my symptoms too well I just took each day as it comes and it was very difficult. Washing my face hurt a lot so I cut down on washing my face. When I took days ofF work I would go a day or two not putting water on my face, this meant my skin had time to calm down and also dry up if it was weeping.

When I did wash my face I added dead sea salt to the water, it helped soften the thick dry skin.

I also stopped wearing make up. The make up itself wasn’t bad but removing it was painful and it meant I had to wash my face every night… so I stopped.

That was basically it. I spent a lot of time indoors, I just took a massive time out from the world so I didn’t have to stress about seeing people… and I also allowed myself to comfort eat. That was the only pleasure I got out of those first few months and even though I was eating a lot of junk I lost a bit of weight! It came back in month 4/5.

Sounds to me like you dealt with TSW symptoms in the best way you could (!) you’re a very brave lady for having the guts to keep on going. When did you start seeing your TSW symptoms getting better? Was there anything you did around this time which you think helped your skin repair?

I noticed a difference around my birthday, May 1st (2018). My skin was noticeably less red and flaking had pretty much stopped. I was still discoloured/scarred from all the inflammation.

I don’t think I did anything that helped my skin directly I honestly think it’s time that healed my skin. I made no changes to my diet, and stuck with the same moisturiser I always used. I did start using Hyaluronic acid on my face and neck around mid-April but by then my skin was already improving without it. My skin healed because I stopped the steroids!

Gosh so 6 months of very real, very painful, very life-changing red skin syndrome. If you could go back in time to give yourself 3 pieces of must know topical steroid withdrawal advice – what would they be?

Oh, that’s a hard question. I think top piece of advice would be it is going to be tough so don’t pretend to be OK. For the first few weeks I tried to carry on like normal and it just wasn’t easy hiding the pain I was in. After accepting my face was red, sore and flaking, I stopped wearing make up and just let everybody know this is going to be my face for a while. So many times I cried at work but people knew what I was going through. If I continued to hide it, it would have been more difficult for people to help or just understand why I felt the way I felt. It’s OK to cry and feel down. Don’t try to bottle it up, but also know, after that cry, pick yourself up and keep going.

Piece of advice number 2 is that it is going to be unpredictable so don’t try and find a cause and effect for why one day your skin is good and the next its terrible – it’s going to happen. Take each day as an individual day and treat each symptom as they come. Don’t try to predict what is going to happen because you will just be disappointed! Don’t compare your journey to anyone else’s either, each case is unique, and everyone heals at their own pace.

And lastly, seek support. Talk about what you’re going through with friends/family and if they don’t understand (nobody really will unless they go through it themselves, harsh truth) look for people on Instagram to follow/talk to. People with “TSW” in their username are people going through withdrawal and everyone is so friendly and helpful. Join Facebook groups – “Topical Steroid Withdrawal Red Skin Syndrome Support Group” is the largest one out there and it’s completely open and honest – people won’t judge you if you post pictures of your skin or if you want to vent about the postman who looked at your skin in disgust, it’s just the best support system ever.

That is honesty such great advice. I love that you point out sometimes skin just has a flare and sometimes that flare is 100% unpredictable – you’re not more stressed than usual, your skincare hasn’t done it and it’s probably just a combination of lots of little things – keep going with what’s working and expect speed-bumps. So you’re now over a year on from beginning your topical steroid withdrawal journey. What does your skin life look like now?

I keep my skin care very simple now. I don’t use soap on my face anymore, just hot water and a flannel. If I’ve been wearing make up I remove it with first, one of those cheap bio oil type oils. Usually you get them from the pound store and it’s orange like bio-oil for a fraction of the cost! I use this on a cotton pad to remove my eye make up first. I use waterproof mascara so it’s the only thing that breaks it down.

Then I get another cotton pad and add a squirt of Bioderma micellar water to remove the foundation and left over mascara. I think its really gentle on my skin.

Moisturisers I use are Palmers cocoa butter and Aquaphor healing ointment for my lips and IF my neck or face is very dry that day I use it there too.

In the mornings after washing I use hyaluronic acid on my face and neck (if I remember but I most likely do this when I’m about to apply make up).

So those are my 5 items I use every day. Relatively inexpensive but I find them reliable.

 

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Don’t give up guys… Last skin update going up on YouTube tonight

A post shared by Zai (@tsw_beezeebuzz) on

After going through withdrawal the skin on my face is very dewy. I can remove my make up, not apply moisturiser, go to sleep and wake up with skin that’s not dry which is amazing. My neck is still not 100% but heaps better than months ago.

That’s fantastic… and so encouraging for anyone reading to know topical steroid withdrawal can and does get better. Final question: Has sticking with topical steroid withdrawal been worth it?

The whole journey has definitely been worth it. Not having to depend on drugs to manage my skin is liberating and also I know that if I do ever have a flare up, my body can overcome it by itself.

What a journey to go through but what a beautiful place to be in now. Thank you so much Zai! Thank you for sharing your red skin syndrome experiences with others. Thank you for being open and honest about what to expect.

Time to chat: Are you considering steroids for eczema? Are you using steroids for eczema? What at home remedies for eczema have you found which work? Help others by leaving your experiences below…