How I Made It Through 4 Years of Topical Steroid Withdrawal, And How It Changed Me

Juliana had a rash at age 12, for which she was prescribed topical steroids. Over the next eight years, plagued by persistent skin problems, she persisted with using topical steroids all over her body until, when aged 21, she decided to stop. Within a week or two, her skin became completely red and for the next four years after, she was ‘burning’, oozing and shedding from head to toe, to the extent she had to take a year off school. Four years after her ordeal with what the Internet terms ‘Topical Steroid Withdrawal’, Juliana tells LUCK-IT everything she’s learned from the experience and offers coping tips to others going through the same.

“Be reminded that you are stronger than what you believe.”

Q: Hi Juliana! First off, can you tell us what topical steroid withdrawal is and how someone can tell when it’s happening to them?

A: Topical Steroid Withdrawal (TSW) is a cluster of symptoms that happens when you stop using enough topical steroids after using them for prolonged periods of time. Now, just what exactly is ‘prolonged periods of time’? It’s advisable to continuously use topical steroids for not more than 2 weeks, so going by that, anything longer than 2 weeks is too long. Of course, it also depends on the strength of the topical steroids. The stronger you use, the shorter you should use them for. In general, the chances of someone having TSW is greatly increased if they have used it for months on end, and notice their skin worsening despite the usage. It can be hard to tell if it’s happening to yourself because you can never be sure if it’s just your eczema worsening or your skin craving more topical steroids (hence entering TSW unknowingly). I can’t really give a simple answer. The more complete one would require a look into personal history:

1.. Did you use potent topical steroids for more than 1 month continuously? Or weak topical steroids for several months/years?
2.. Has your doctor been prescribing you increasingly potent topical steroids to maintain your skin?
3.. Did you experience worsening of the rash, spreading of the rash, burning, oozing, more dryness than before?
4.. Does your skin worsen the moment you stop applying topical steroids?
5.. Do you feel like you can’t maintain your current skin without the topical steroids?

Actually, as long as your answer for 4 and 5 is a yes, I can say with 90% confidence that your skin is already addicted to topical steroids, and if you’re not applying more frequently, or more potent steroids, you will experience withdrawal symptoms, which is what I lined out in number 3.

How did you realise you were going through topical steroid withdrawal yourself?

It was after I stopped my 9-day oral steroids treatment. My skin was worsening again and I was shedding, from my body, tiny skin flakes everywhere. My skin was red! My then ex-boyfriend told me I have TSA [Topical Steroid Addiction]. I didn’t believe him because as far as I knew, one can only be addicted to oral steroids, which I had been using very rarely. I googled ‘eczema red skin’ and chanced upon Kelly’s page about red skin syndrome. Her photos were what convinced me I was going through TSW, because we looked the same. Dry, red face. Which is also why I decided to take photos of my skin (even though I really didn’t want to look at them) and post them on my blog!

How did you even start using topical steroids in the first place?

The same as everyone I suppose! A doctor prescribed it to me! It was a general practitioner in the very beginning. I had some rashes, he prescribed it to me. End of story.

How much topical steroids were you using before you ended up with withdrawal, and how regularly were you using it? Were you following your doctor’s instructions when using or did you just use it whenever you felt you needed to?

Let’s just define ‘ended up with withdrawal’ as the point I decided to stop using topical steroids, because I believe my skin already went into withdrawal before I stopped using steroids although I’m not sure when that was exactly! I had been using topical steroids since I was 12? I was 21 when I stopped. Initially, I would only use them on the rashy bits, for a few days until they went away. Then repeat when they came back. During the last 5 years of my usage, I was using them twice a day, all over my body (because I had rashes almost everywhere). It was betamethasone valerate. I still remember it was quarter strength and half strength. My dermatologist prescribed me TUBS of that. Not tubes, but TUBS! Strangely, my doctor didn’t give me much instructions other than to “use them when itchy”. So I did use them every day because I itched every day. Also the rashes never really went away, so I gotta keep applying until they do, right? When I did withdraw from topical steroids, and was crying to a dermatologist at the NSC [National Skin Centre in Singapore] hoping to get them to diagnose my skin as a TSW case, she told me to “use the topical steroids every day until the skin clears up”. self-censored expletive

How long did it take for you to recover from topical steroid withdrawal? Did the condition affect your life in any way? If so, how?

I’ve quit topical steroids for 8 years now. It took me 2 years to heal from the worst flare. And then throughout the other years, I continue to deal with relatively minor flares. I feel like I never truly healed from my eczema, so I’m still working on that!

TSW left me quite debilitated at that time. I went from social butterfly to hermit. I couldn’t function normally as I was exhausted (from not being able to fall asleep at night) and couldn’t perform well at school. I had to take a year off school in fact. I even stopped watching TV in the living room because I didn’t want to leave a pile of skin there. I spent all my time in my room. I lost all self-esteem and confidence, got depressed, but not depressed enough to shut myself out from my friends completely. I also had thoughts of dying but I couldn’t bring myself to do that to my family. I felt like a constant burden to them, but it’s also this thought that makes me want to do anything I can for them right now.

How did you finally get over topical steroid withdrawal? What was the turning point/course of action that got you there?

For me, it was Traditional Chinese Medicine (TCM). As I had to return to school after my gap year, I wanted a little help from someone experienced at treating skin conditions. I was really glad it worked for me, as it helped me go from 80% to 99% healed. Of course, I got complacent and stopped treatment 1 year in, and started adopting my previous unhealthy (but very fun) living habits. I guess the saying is true: live fast, die young. Or in this case: live fast, bad skin.

Did the process of going through topical steroid withdrawal heal your eczema too, you think?

Overall, it’s a ‘no’. I still have my underlying eczema that has been unresolved for too many years. It did get a lot better, like almost unnoticeable during my first stint of TCM back in 2013, but apparently the problem’s still not fixed! Especially when I went back to my old ways of partying and drinking.

What was your routine like during your worst phases of topical steroid withdrawal? How did you care for your skin, self and surroundings?

Oh my, the routine is depressing. I’d wake up around 8am, staring at the window as the sky brightened. I’d wish for the night to come faster because I didn’t want the light to show me how bad my skin was. I wanted to sleep my day away so I wouldn’t have to move or see much. When I finally felt too dry from spending too much time immobile in bed, I’d get up for a shower. I still remember I had to mentally prepare myself for the pain I’d experience when the water first hit me. I would spend 20 minutes just having water run over me—the only time I would feel rather normal again because my skin would no longer be dry and tight. But I knew after leaving the shower, I’d have to experience the dryness all over again. It is like going to heaven then going straight to hell, falling double the distance. I’d then sit in front of a fan to dry myself out, apply dollops of vaseline (when my skin could tolerate it. Otherwise I would just slowly let it dry up and turn into Groot? I imagine this is how he feels.) and enjoy the remaining bits of flexibility and elasticity in my skin. I think I spent too much time picking on my skin. I just hated how rough it felt when I ran my hands across my skin. Lots of scratching and rubbing later on to soothe the tingling and itch. I’d eat, drown myself out with TV shows because that was the only thing I could do that didn’t require my hands (as I needed them to scratchy scratch). Nightfall, I’d feel happier then head to bed hoping to fall asleep, but it would always take me a few hours as I would be tingling. When I was oozing, I had to pad those areas with cotton pad to prevent it seeping into my sheets too. I had to sleep in certain positions to limit contact with the bed. Still have no idea how I survived those days, other than the fact that the human body is a lot more resilient than you’d think.

I didn’t really care much for my skin and self back then. I really should have spent the time reading books good for my soul and mental state. Nothing I did seemed to help with the skin anyway, and creams were a big no-no during the worst as it stung so it was really just showering twice (with just water) and trying to keep my surroundings as clean as possible (thank god for my mom as she cleaned my room for me).

Now that you’re much better, what is your routine like? Do you do anything special to keep the topical steroid withdrawal flares or eczema at bay?

I can fall asleep around 11pm and wake up at 6am for work 🙂 I CAN WORK NOW! In fact I can do many things which I used to be able to do before TSW. I only shower once a day now! A HUGE improvement because my skin feels less dry now. I use creams to keep the dryness at bay, I really like Cetaphil Restoraderm cream as it contains a good blend of ceramides and niacinamide which restores the skin barrier and calms it down. It’s not too oily so it doesn’t leave my skin sticky. I’ve also switched to Avene products for facial skin care because they don’t irritate my skin! They keep my skin moisturised and supple most of the time, unless I have another tiny tiny flare (like real tiny, because it’s only 2 rashes on my cheeks) then the skin does its thing and goes through the red/itchy/dry/shedding cycle. Can’t say it prevents a flare from happening because I still have flares, especially before my period!!! But these are the things I find to not sting my skin even when it’s acting up.

How do you presently spend your weekends?

This question makes me guilty, because it’s kinda like how I spent it last time during TSW… at home and in front of my computer. BUT, on top of that, I cook, I do my laundry, I clean my room, I play games with my boyfriend, and occasionally, I go out for a hike or spend it with family. Okay, spelling those out makes me feel like I didn’t really waste my good skin time 🙂

What advice do you have for someone going through topical steroid withdrawal too?

Be mentally prepared for the shitty days you’re about to face, it really tests your sanity. If I can make it through, so can you. If it helps, visit my skin blog for some hope. A lot of readers told me it helps them when they read what I had written in the past. Maybe it’s the photos too? I don’t really know. Secondly, be patient. “Take it one day at a time” should be the tagline for TSW! Be reminded that you are stronger than what you believe. Lastly, if you see a lot of yellowish pustules that resemble pus (they have the milky yellow colour, unlike interstitial fluid that is yellow but a clear fluid), visit the doctor for a possible infection. You’d need antibiotics for that sh*t.

Can you map out a recommended path to healing for people going through topical steroid withdrawal to follow?

Stopping topical steroids is the first step. The rest is just a survival response. Seek support from friends and family. The ITSAN [International Topical Steroid Addiction Network] community can help you in the beginning so make sure to head over there for some moral support. But don’t linger because what else do you expect from a bunch of miserable people who are all suffering? Be patient; the worst is yet to come, but once it does, you know you’re half-way through the battle. It can take months just for it to get that bad. It really depends on your body. I notice the healthier you are, the faster you get worse and from there you’ll truly experience the recovery.

What key things/people/situations enabled you to make it through topical steroid withdrawal, in your opinion?

Hands down, my family!!! It wasn’t even myself, because I wasn’t myself back then. I was staying alive for my family because of their love for me. Some of my skin friends weren’t as lucky—their family didn’t support the idea of TSW, and insisted they go back to treatments. I was also very fortunate to have been able to rest at home for the entire year. I didn’t have the kind of financial burden others have. Nor do I have children of my own to support. I just had to make sure I was still breathing.

How did going through topical steroid withdrawal change you as a person? Or did it not change you?

Did TSW affect my life in any way? F*CK YES! It turned my world around, broke me down, built me up and gave me strength I never could imagine having. I never knew at that moment how I could survive the endless cycles of shedding, oozing, and itching but I made it through somehow. I started to appreciate my very supportive family, because if not for them, I couldn’t have made it. I earned that strength, and I use it as a reminder when I feel down in life. It has also given me the power to be more empathetic towards others. We’re all suffering in some way or another; why did I think I was the only one who had it the worst? I’ve learnt to be more kind towards others. So, even though it sucks to have had a few years of my life taken away from me, I think of it as a mental retreat where I learned how to be a better person, and also how to live in harmony with this world, my mind and my body. Also, it has given me a brand new perspective–now I am more appreciative and thankful of everything in life (I felt this the strongest right after I returned to school though as time goes by, I need reminders to remind myself how good I have it right now). Deprivation is the best spice in life!

If you could go back and replay your whole journey of healing from topical steroid withdrawal all over again, what would you do differently?

I would spend those times more productively. I could have read so many books during those times, learned so much more than I could have done. Books have given me some peace of mind, that I’m not wasting my life away because I am gaining something even though all I can do is read. Maybe pick up how to trade as well, so I could have earned some money on the side while being home-bound? Too bad!!!

How much topical steroids did you use as a child? What about as a teenager and a young adult? Have you noticed any patterns between the condition of your skin and your use of topical steroids?

Not much as a child, because when I was just a kid, I was clearly more wise. I refused to use the creams because I didn’t want to dirty my sheets. As a teenager, I got more vain and wanted to get rid of the rashes so of course I started using it more. As my skin got worse, I used more topical steroids. Sometimes I wonder if my increased use of topical steroids worsened my skin too.

Which major event in your life made you who you are, in your opinion? Why do you think so?

I was really lucky as a kid, I never had any huge problems or issues other than minding my grades at school. So as of right now, going through TSW, it has been humbling, and very educational for me, spiritually and mentally. You really have to fall to the lowest possible level in your life in order for you to evaluate what the most important things in life are. When everything is stripped away from you, you realise those are not essential. And from there, the mental world I build is laid on much stronger foundations. It’s weird because I didn’t want TSW to define who I am, yet it contributed a lot to who I am today.

(about the photo above, cont’d) “If you zoom all the way in, you can still see my neck is atrophied, and slightly rashy. Skin looked really good after my period and has fluctuated along with my hormones and flared a little since that week. So much has happened in one week! My neck is now recovering from a flare [that started] 6 days ago and it has gone through the same old ‘itch -> red -> dry and shedding -> smooth and fragile -> dry again but less red’ cycle. Same with the area around my lips too. Will it end one day? Yes. It just takes a long while because my skin has definitely atrophied and is even more easily irritated than before. Other than that I think I look spectacular in the photo. Only had some concealer underneath my eyes!”

Which 3 objects/people could you not live without when going through topical steroid withdrawal? Why?

My mother, my brother, and vaseline. My mother and brother are super supportive and helpful, and never once complained about my skin and its inconveniences. My mom worked, and had to cook for me and clean my room for me. She did so much for me. As for vaseline, it helped me retain a little elasticity in my skin moments after showering, giving me the ability to move without as much pain and skin tearing.

Of all the objects you bought for coping with the symptoms of topical steroid withdrawal, which has been most useful? Why?

Probably vaseline too, because it’s inexpensive, didn’t irritate (when my skin was better), and gave me some level of relief to function.

Which person do you wish LUCK-IT would interview for you to learn from? Why?

The Dalai Lama, because he contains so much wisdom and joy, I want to learn how to cultivate that too! Especially when life is filled with difficulties and hardship.

What is the worst advice you’ve been given, or have heard people giving, with regards to skin care? And what’s the best?

The worst would be the dermatologist who asked me to apply topical steroids DAILY, ALL OVER MY SKIN. No thanks.

The best would be to leave it alone as much as possible! If it’s not broken, don’t try to fix it.

Juliana is presently a sales and operations executive, working 9-6 for a brand she loves. She works on herself when not at work and of late has been figuring out and dealing with emotional issues. You can read more about her experience with TSW on her blog (although she hasn’t been updating because life has gotten in the way) or ask her to tell you more about it by leaving your questions in the comment box below.

Interviewer’s Note:
A couple of years ago, a series of spreading rashes all over my body made me consult three different doctors over five months. All three—one of whom was even a skin specialist—diagnosed and prescribed the same thing: eczema of unknown origin and tubes of increasingly potent topical steroids (the final batch being Clobetasol, the most potent topical steroid of them all). The response of my skin was always the same: better with topical steroid application but way worse the second I stopped applying the creams. It took me many cycles of this to put two and two together but I eventually concluded my worsening skin condition might ironically be linked to the creams the doctors were telling me to apply. I figured I might be allergic to the creams so I stopped all at once and right away ended up house-bound for months when all of my skin immediately erupted in crazy itchy oozing sores that would grow dramatically in size and thickness before crusting over and flaking like snow over time. I was ghastly disfigured, scratching all the time, had insomnia and strange zapping sensations every single night, and I truly believed I was suffering a disease doctors didn’t yet know about. It was then I found Juliana’s blog on the internet, and more from others who looked just like her and myself, and finally realised what might really be going on. I told my doctor (the skin specialist) about what I found but he refused to acknowledge the link between the creams he’d prescribed and my skin condition. In the end, I had only Juliana’s blog and that of others like her to rely on for tips on what to do to feel better and function better. My skin is now back to normal and all I did to get it back was—not consult more doctors but, like Juliana and others said—wait it out and let my body heal itself. And for that information, I am forever grateful.

Photographs courtesy and copyright of Juliana. Interviewer: Sy
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