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Topical Steroid Withdrawal

10/12/2015

19 Comments

 
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I try to stay positive when I write this blog, but honestly, this journey has not been all dandelions and rainbows. I’ve learned a lot, vastly improved the condition of my skin and overall health, and I’ve even been able to connect with other people who suffer from the same symptoms that I do, however it often feels like every time I take one step forward I end up taking two steps back. My initial plan was to get a new post up every week, but half of the time I’m just trying to figure out what triggered my skin to break out this time or why everything I’m doing doesn’t seem to be working. This past month I’ve spent a lot of time researching and reading other people’s blogs for inspiration.
Well, my research finally paid off. A Holistic Nutritionist actually found me on Instagram, and I checked out her blog about healing eczema naturally. Part of her blog features her followers who have healed themselves from eczema. One post was about a girl who healed from Topical Steroid Withdrawal…pause. Whet?!?!! Topical Steroid Withdrawal? What is this sorcery? So I read her story and then trolled the internet to learn more about this phenomenon I had never heard of. Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome (RSS), is a skin condition that can arise from topical steroid use. It finally all made sense.

When I stopped using topical steroids in October, it was because I literally felt like I was addicted to them. I had no idea that Topical Steroid Addiction was a legit thing. I kept reading and researching, and I found all of my symptoms, pictures of people’s skin that looked like mine, the long recovery period, anxiety, depression, fatigue, insomnia, food allergies, leaky gut…everything. I finally understood why nothing was working. All this time, I’ve been treating the wrong condition. Yes, topical steroid addiction can lead to a leaky gut, but the root of everything has been my prolonged use of topical steroids.

Topical Steroid Addiction is developed when topical steroids are used to treat skin conditions for a time; however, after a while, the steroids become less and less effective. When this happens, stronger steroids are prescribed to treat the skin. This is what dermatologists have been doing with me my entire life. It got to the point where I was using a tube of topical steroids in about a week and a half just to treat my hands and the insides of my elbows. Every time I stopped using, my eczema would come back even harder. This is known as the rebound effect. The skin continues to get worse, and it’s treated as worsening eczema, when in fact it is a reaction to topical steroid use. This reaction also spreads to new places on the body that originally had no eczema. ​

The withdrawal symptoms occur when the use of topical steroids is stopped or even in between treatments. They include flushing bright red skin (hence the name RSS), excessive flaking, oozing, skin cycling between oozing, swelling, burning and flaking, elephant wrinkles, hypopigmentation, hyperpigmentation, temperature dysregulation, intense itching, enlarged lymph nodes, edema, insomnia, appetite changes, fatigue, depression, and anxiety. At one point or another, I have experienced almost all of these symptoms. Below is a short video from The International Topical Steroid Awareness Network that explains RSS.
I actually first experienced TSW around the end of 2011 on accident. I never liked using topical steroids, so when my prescription ran out, and I had no doctor to prescribe more, I just stopped using them. I can't remember if my skin started breaking out while I was still on the steroids and my prescription wasn't strong enough anymore or if the withdrawal symptoms began when I discontinued use. Either way, my skin was a mess for about a year and a half. My skin started breaking out in places it never had before, and I lost pigmentation on my face. It was all over my legs and arms, my eyes were constantly swollen, it burned, and it all happened while I was playing Roberta D. Crow in The Snowy Day…of course. I also dealt with depression and fatigue at this time. It was so bad that when I finally did go to the dermatologist, she asked if vitiligo ran in my family. At the time, I thought my skin was going crazy because my eating disorder had gotten out of control, and I developed an allergy to dairy. The only thing the dermatologist could do was prescribe more topical steroids. I wanted to know why my skin was going haywire, and she had no answers and made no effort to try and find some. I was frustrated that she was no help but desperate for my skin to be normal again, so I took the prescription. She even prescribed an oral steroid, but taking the steroids internally didn’t sit right in my spirit. I stayed away from cameras during the bad flare-ups, but I have a few pictures that show the discoloration on my face.

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Roberta D Crow. I have on makeup in this picture, but you can see a little of the discoloration on my forehead and the puffiness under my eyes.
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You can see the discoloration on my forehead.
My skin didn’t heal immediately, but I think the changes I made in my diet really helped calm down the symptoms. I assumed that was the only reason my skin got better, but using steroids again made a huge impact. My skin finally got its fix and stopped crying out in withdrawal symptoms. After a year or so, my skin tone evened out, and I even stopped getting flares on my face by 2014 (above my upper lip and my eyes have been problem areas since I was a child). I only dealt with small flares on my hands, forearms, and the insides of my elbows. 

During the summer of 2014, some stressful situations caused a few intense breakouts reminiscent of the ones I dealt with during the first round of TSW. They usually lasted for about a week, and my skin would slowly clear up. I continued to use the steroid creams, but I was using a tube a week. I decided to find a natural way to heal my eczema because I hated feeling like a slave to the creams. I stopped the steroid use at the end of October 2014 and unknowingly started the second round of TSW, this time while I was performing in A Christmas Carol. The withdrawal symptoms were even worse this time around, and I'm still dealing with the effects. Below are a few pictures showing how my skin has been affected. If you want more details about those symptoms, check out My Healing Journey.
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December 2014. Irritation above my lips, redness on my eyelids, swollen eyes, elephant wrinkles and discoloration all over my face.
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February 2015. I kept breaking out in hives around this time and was constantly red.
So now I know the cause of all of this madness. The toxins I’ve been putting on my body my entire life are being released out of my system in every way possible. I’m convinced they’re the cause of my chronic congestion, every food allergy, the depression, anxiety, digestive issues…I’m blaming it all on these dang steroids. I’m just thankful that I finally know what I’m up against.

TSW can take anywhere from months to years to heal, depending on how long topical steroids were used, the strength of the prescriptions, and whether or not oral steroids were used. The skin goes through cycles of breaking out and shedding until the skin heals for good. Hence the random flares I’ve been experiencing. On the bright side, each flareup is usually less intense than the previous one. There’s no magic remedy or quick fix to heal TSW other than to go through the healing process. However, I’ve read multiple stories of people who have experienced vast improvement of their symptoms by going through moisture withdrawal, which also seems to reduce the amount of time it takes to heal. Moisture withdrawal is the process of not putting anything on the skin at all. No moisturizer, ointment, salves…nothing. Very counterintuitive to everything I’ve ever been taught about dry skin and eczema, but hey, look where following doctors’ advice has gotten me so far. I might as well throw it all out the window at this point. I started moisturizer withdrawal last weekend and will be reporting soon how it’s going and the reasoning behind it. Until then, if you have any of these symptoms or just want more info, please check out the websites and blogs I’ve added below that enlightened me. Much love and until next time!​

http://itsan.org/

http://www.primephysiquenutrition.com/

http://saynototopicalsteroids.com/blog/

http://topicalsteroidsurvivor.blogspot.com/

https://eczemaholistichealing.wordpress.com/my-story/
19 Comments
Valeka
10/12/2015 05:21:56 am

I LOVE YOU BLOG!!!

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Lauren
10/17/2015 11:36:36 pm

Thanks Valeka!

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Leslie Chua link
10/17/2015 08:27:56 pm

Hi Lauren,

All the best in your recovery journey! Thanks for sharing my blog with your post. Hope the information helped you as much as they did for me =)

Leslie

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Lauren
10/17/2015 11:38:13 pm

Hi Leslie,

No problem and thank you for your blog! It's been very helpful during this process.

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Hopeful
7/7/2016 06:58:33 pm

Thanks alot Lauren for sharing......I hope u re doing much better now......I used a bethamethasone, clotrimazole and neomycin cream as a face moisturizer for four years I went thru TSW late last year around October but then I had no idea about it I looked really bad with major discolorations on my face so I had to go back to the cream until I broke out with acne in February ds year...weird bcus i've neva had pimple issues...I thought it was due to other products like my soap and bio oil so I stop them and increased my steroid usage hoping it will clear the acne, unfortunately it just continued spreading and became really painful it dawned on me two months ago so I stopped cold turkey two months ago and started browsing a lot and learnt about TSW and moisturizer withdrawal which I started about 16 days ago....so far so good....I still break out but not in tons anymore.......its not bn an easy experience so far, I cry sometimes......I would really appreciate any tip u wud give me that can help me hold on through this phase.....

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Lauren
7/8/2016 01:11:20 pm

I also started TSW without knowing it. I just thought my body was going crazy, but then later learned what TSW was. Stay strong and always remember that whatever you're going through is not permanent. Flares happen, but they don't last forever. They suck, but your skin will get better. What helped me were Dead Sea salt baths, sometimes I tried oatmeal baths, and occasionally apple cider vinegar baths (these might sting of you have a lot of cuts/open wounds). I also used witch hazel and tea tree oil topically to soothe my skin and clean cuts and open spots. I also slept with socks on my hands many times to stop myself from scratching. Different things work for different people so always continue to research and find what's best for you. I've also recently come across information about Dr. Aron who has a different method to treat eczema. Look him up and see if that's something you'd be interested in. His patients have a fb group where they share their success stories. I'm considering trying his treatment. Stay positive and I'll keep you on my prayers!

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Hopeful
7/8/2016 11:35:55 pm

Awww.......Thanks for replying......And thanks a whole lot for ur suggestions and support......I'll look Dr. Aron up....

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Helen
3/2/2019 01:10:06 am

Hi, just come across this - wondering how you are now? Helping my daughter get through it, and particularly interested in any holistic ideas, like diet...thanks!

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Lauren
3/8/2019 02:47:00 pm

Hi Helen,

I actually returned to steroids, using the Dr. Aron Regimen, but it hasn't been working well for me. I'll probably stop using them very soon, but I focus a lot on my diet. I've been transitioning to an alkaline vegan diet, but the foods that cause my eczema to flare are sugar, dairy, most gluten, soy and corn. I okay with ancient grains like rye, spelt and kamut flour. I would say stay away from processed foods because they're the worst.

I also use natural remedies like applying Manuka honey, fresh aloe vera, tea tree oil and coconut oil topically. Calendula oil is also good and helps with healing cuts. I hope this helps!

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Helen
3/14/2019 02:27:44 am

Hi Lauren -
My daughter has been on a vegan alkaline diet since the end of January. It's very hard to tell what's going on as there are so many factors. The only thing I would say is that her TSW symptoms are spreading very slowly.

That's such a pain that you had to start on the steroids again. Guessing that you had such a bad flare-up that you felt you had to do something drastic?

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Lauren
3/29/2019 11:47:19 am

Hi Helen.

Yes. I had a few really bad flares while I was performing, which made it very hard to deal with. I’m ready to stop using them again though. It’s been a temporary fix, but they’re not working well anymore. How is your daughter doing?

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jalisa phillip
3/26/2020 04:36:35 pm

Thanks for sharing. I am going though this currently and it hurts physically and emotionally. So much discoloration it’s crazy.

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Lauren
3/27/2020 05:29:29 pm

Hey Jalisa,

I hope you find some relief soon. I'm almost a year in my second time going through topical steroid withdrawal and I still have a ton of discoloration. It's a lot better than it was a few months ago though.

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Angela Leiva
7/5/2020 06:33:26 pm

Hi Lauren, I think I’m currently going through this and it’s so hard. It’s on my eyelids/under eye area and my lips and around the mouth. I’ve been dealing with this for about 6 months. I’m wondering if you’ve tried anything for the wrinkles? It sucks so much cause I’m so young and I have all these wrinkles. The hyperpigmentation is also very difficult. I know shea butter and turmeric can help and other things, but I don’t want to put anything on my face and it possible get worse. I just hope this goes away this year. It’s so hard. Any tips would be greatly appreciated❤️How is your skin doing now?

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Du Pree
7/8/2020 05:41:45 pm

Hey Angela. I’m so sorry you’re going through this. The beginning of topical steroid withdrawal is particularly brutal. One thing that really helped me and that I still do today is Dead Sea salt baths. It’s a relief to be in the tub and really nourishes the body and your skin. You may not see or feel a difference immediately or even after a while, but it’s something that a lot of people in the TSW community use frequently.

The wrinkles will go away with time. I know it’s so frustrating, but your body just has to go through the healing process. Have you changed your diet at all? I’ve cut out gluten, dairy, sugar and processed foods. It makes a huge difference. I also mainly use Shea butter. Hyaluronic acid is something else you could look into using, but every person needs something different. Also, things that didn’t work for me at one point in my healing journey worked later on. It’s a constant process of trial and error.

This is my latest skin update, but I’m doing even better now: https://www.justdupree.com/blog/topical-steroid-withdrawal-take-two-one-year-update

I also do updates on Instagram: https://www.instagram.com/justdupreetheblog/

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Angela Leiva
7/10/2020 08:46:58 pm

Hi love, thank you for the words and advice. I was vegetarian for a while now but I decided to just go vegan after learning more about eczema etc. It’s so frustrating because I’m not even sure if I’m going through TSW or if it’s just contact dermatitis (what they said it is ). I have been doing the moisture withdrawal and it feels better like the texture of my skin but it’s still super itchy etc. It’s so hard to not scratch cause I know that also makes the wrinkles worse. It’s very difficult, and I’m scared to put anything on my face in fear that it will get worse. I used the steroid cream on and off for about like 5 months so I’m not sure if that’s even enough to like have that effect (cause whenever I see pictures it’s much more everywhere rather than how I have it). The skin on my lips/mouth is very sensitive. I know I’m not really saying much but thank you so much for the advice, you’re so flipping strong. I hope that I’ll figure out how to help it and for the wrinkles and hyperpigmentation to go away. I’ll keep up with your skincare also. Thank you so much love, stay safe🌹✨❤️

Du Pree
7/13/2020 02:31:55 pm

It's hard to know whether it's TSW or just eczema. For me, I was using steroids my entire life and kept having to use stronger and stronger prescriptions to keep the flares at bay. Then I started getting horrible flares on my face even while using the medication. When I stopped using the steroids I started getting eczema in places I never had before.

If your skin is worse now than it was before you used the steroids, it's probably some form of topical steroid withdrawal that you're dealing with. The itching is unbearable, I know. I used to take Benadryl when I couldn't stand it anymore. I don't recommend taking it regularly, because I eventually felt like it didn't help anymore after taking it so much, but it's an option for those desperate days. Definitely not all natural, which is what I strive for in all the treatments I use, but some days you just need a break.

Sending you love and praying for your healing.

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Eugene Short link
12/26/2020 05:11:45 am

Niice blog you have

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Kanika Sharma
8/23/2022 04:16:01 am

I have some discoloration on one side of my lips due to topical use of steroids .what to do

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    I'm Lauren, aka Just Du Pree, and I want to thank you for reading. This is a space where I share my very personal journey healing from eczema and topical steroid withdrawal (among other things), life lessons I've learned along the way, and occasionally the thoughts of an awkward Black girl (no Issa Rae). I'm a performer and filmmaker, so if you feel so inclined, pop over here to see what goes on in my mind on the regular. If you like what you see, you can stay up to date with my work here. Much love, friends!
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