I am so excited today to share an article from Caileigh. She went through Topical Steroid Withdrawal (TSW) back in July, and has already recovered now! It’s such an incredible story, and I hope that it encourages all of you (wherever you’re at in your journey today).
She offers tons of great advice in her guest post and I’m glad that she also stumbled on one of my articles during her healing process (or else we wouldn’t have met!).
Keep reading below and remember to stay strong and listen to your body. 🙂
Hi everyone, I just wanted to share a success story! I started Topical Steroid Withdrawal (Red Skin Syndrome) a month ago today (on July 10, 2015) and my skin is all clear & healed now. The key to my success? Diet, moisturizer withdrawal from the start, supplements, sunshine and a low-stress positive environment for healing. I have detailed what I did below in the hopes that it can be helpful to you all! Now, I am a firm believer that in order to heal our skin, we must heal our bodies from the inside out and that begins with diet.
I have had mild dry eczema my whole life that would appear and reappear on patches on my arms, legs and neck, but I never had all these patches inflamed at once. I had been been using a prescription steroid cream for eczema with hydrocortisone valerate .2 since I was 8 years old and I would use the eczema steroid cream a few times a month on my small patches of eczema. I am now 22.
Start of TSW journey:
Right before I started TSW, I had little incredibly itchy red bumps over my arms, stomach and legs. I had been using prescription steroids creams to deal with these itchy bumps, that I thought were heat rash or an allergic reaction.
The bumps would go away and then, once I stopped using the creams, they would come back again. Then, I decided to stop using steroids on July 10, 2015, and my skin became the WORST that it had ever been.
My little itchy bumps started to turn into red rash everywhere (including my face where I never used the steroids creams.) My rash was not very itchy but it was so uncomfortable and my skin felt like sandpaper. I also was very low energy the first two weeks of TSW.
Red Skin Syndrome Diet:
From the very beginning of TSW, I changed my diet. Before TSW, I was vegetarian and occasionally ate seafood. Once I started the withdrawal, I decided to cut out as many possibly allergens and inflammatory foods as I could, I stopped eating dairy, gluten, soy, corn, nightshade vegetables, processed sugar, processed foods, caffeine and alcohol.
I read a TON of articles (like this one from Abby) about the link between the gut and eczema and how most people with eczema have a leaky gut! I also decided to only eat organic foods to help minimize the toxins in my body.
Now, I make sure to stay super hydrated and drink only filtered water.
For breakfast, I drink a TBSP of apple cider vinegar with water first. Then, I have a big smoothie filled with frozen fruits (mangoes, bananas, strawberries), hemp seeds, hemp oil, flax seeds, chia seeds, fresh ginger, ground turmeric, pea protein powder & occasionally spirulina.
I did have coconut water in the smoothies at first, but then I heard that lots of people are allergic to coconut so I decided to stop using it. I used either filtered water or homemade almond milk in my smoothies.
For lunch, I have either sweet potato/quinoa/brown rice with a big salad (spinach, kale, cold pressed olive oil, walnuts, olives, carrots, avocado, apple etc.) or a stir fry or a hearty bean soup. I use tamari instead of soy sauce for the stir frys.
For dinner, I will sometimes have a green smoothie (spinach, banana and water) if I’m not very hungry or I will have a meal similar to what I have for lunch.
I made sure that I was well-nourished during TSW to give my body all the support that it needed to heal, but I didn’t want to over-eat and put more stress on my digestive system and gut. This diet may sound restrictive or difficult but I felt so much better and really believe that I healed so much faster because of my diet.
Plus, there are still SO many amazing things to eat and snack on like hummus, guacamole, dates, banana ice cream (blend frozen bananas with cocoa powder!), kale chips, dark chocolate etc.
It just requires a little creativity. If I had a juicer, I definitely would have used it during this time but, unfortunately, I do not have one.
Moisturizer Withdrawal (MW):
Before TSW, I used to moisturize multiple times a day with Aveeno lotion (especially after a shower or bath.) I would also use a natural lotion made from shea butter on my face.
For the first three days of TSW, I used coconut oil on my skin and that seemed to make my skin even more inflamed, so, after doing some research, I decided to go through moisturizer withdrawal on my entire body, including my lips (which were super addicted to chapstick.)
Within a day or two of MW, my red rash everywhere started to dry out and turn into white flakes. Before MW, my face, neck and ears were oozing a bit but it completely stopped once I did MW.
It was such a relief to see my skin calm down a bit, even though the MW did make my skin feel tight (especially my face and it was difficult to open my mouth all the way.)
During this time, I visited a doctor who told me to cover my skin with Aquaphor, a dermatologist who told me to cover myself with vaseline and a naturopathic physician who told me to use her natural cream.
I didn’t listen to any of them, instead, I listened to my body. I didn’t shower for the first week of MW to give my skin the chance to heal on its own and I didn’t want to strip my skin of natural oils.
I tried my hardest not to itch or pick at my flakes to give my new skin the chance to form underneath the crusts.
After a week of MW, I started to shower every other day but not use any soap in the shower or moisturizer after the showers, instead, I would just pat my skin dry with a towel.
After two weeks of MW, the skin on the majority of my body was approximately 85% healed and most of the dry flakes had fallen away, it took another week and a half for my face to heal.
Two and a half weeks into MW, I started taking 20 minute baths every day. In the baths, I put epsom salts and a little bit of avocado oil, jojoba oil and vitamin E oil (occasionally bentonite clay as well.)
Two and a half weeks into MW, I decided to try putting a little jojoba oil on my face and it got a bit red and irritated, so I decided to stop, and after a day or two of not moisturizing again, the redness disappeared.
Around this time, my family took a day trip to the beach and I was able to swim in the ocean, which only made my skin sting a little bit.
Now, I have NO flakes or redness anywhere (except my lips are still a little bit chapped but not bad at all) and my skin is so much softer and stronger than it ever was before. I am also barely even itchy, even in this summer humidity.
Supplements & Naturopathic Physician:
Starting from the first few days of TSW, I begin taking supplements. I went to see a naturopathic physician for red skin syndrome remedies (it cost about $300 for first visit and $170 for supplements) who told me to take a super duper multi-vitamin (full of all the vitamin Ds and Bs and everything else you could think of), an omega-3 & 6 fish oil supplement (only part of my diet that isn’t vegan), a legit probiotic (most aren’t because they aren’t refrigerated) & vitamin D-3 drops.
On top of that, every day, I also take primrose evening oil, borage oil, milk thistle (which I just took for first 3 weeks to support liver health) and zinc (every other day.) I also got blood work done and, from the results of my tests, I found out that I was B vitamin deficient, a bit anemic (that was before I started eating so much spinach), and that I have a sluggish digestive system (which is probably the root cause, along with the steroids, of my skin and health problems.)
Steroid Withdrawal, Eczema and Sunshine:
The first few days when my skin was super red, I did not go into the sun BUT once my skin started crusting even a little bit, I made sure to get 40 minutes of sun a day MINIMUM.
Vitamin D is so important for healing our skin and PLEASE don’t use sunscreen on your skin. I think getting sun almost every day really helped me heal. Once I started to sweat, I would get itchy so I tried to inside or into the shade when I needed to.
Now, the heat does not bother me at all and I can even sweat comfortably again.
Low stress & staying positive, a big key to Red Skin Syndrome treatment:
Right after deciding to quit the steroids, I embarked on a long bus trip to visit a friend. HUGE mistake. My skin got worse and worse and I felt incredibly stressed being around people with my skin in such an uncomfortable state.
I decided to return early from my trip so that I could focus on healing. I was super stressed the first few days of TSW because I did not know how long the withdrawal would last.
My mother is amazing and she told me that I needed to keep calm in order to heal, after the first few days I was able to listen to her advice and try to stay positive and make the best of this experience.
I was very blessed that I could work remotely from my full time job during this time and that I have friends and family that were able to take care of me during this difficult time.
I think keeping my stress levels relatively low and staying very positive were also keys to my fast healing process.
If you can, work remotely from your job and rely on your loved ones as much as you can during this time, it will help you heal faster. Try not to just sit in one room all day.
If you can, go for walks, drives or listen to podcasts or call your friends/family, it will help you stay positive and connected to the world during this time.
Most people don’t know about TSW obviously and most people don’t even know about eczema. It helps to send people articles or talk to them about it so they can spread the word.
But, while I was happy to tell my friends about what I was going through, I told my friends that I didn’t want their advice about how to heal from eczema (some of their advice included: use aloe, take oatmeal baths, don’t itch and other brilliant suggestions that I never would have thought of 😉 )
Red Skin Syndrome Healing, Managing the Itch:
I think I wasn’t very itchy during TSW because I ate so well and cut out as many allergens and inflammatory foods as I could. For the first two and a half weeks, being outside in the humidity made me itchy, but now it doesn’t at all.
Even though the humidity bothered my skin during TSW, the sun felt really good and nourishing for my skin (until I would start to sweat at get itchy, ha.)
I also realized that whenever I started to get itchy, my body was actually telling me that I was hungry or dehydrated so I would chug water or have a snack and the itchy feeling would generally go away.
I also found that lying down when I was really itchy and wearing long sleeves and pants (all cotton) during the first two weeks really helped me itch less.
I hope this is helpful to some of you and please feel free to reach out with any questions! I did a ton of research during this time and I would be happy to email any of you all the articles that I found.
Remember, it gets worse before it gets better but it WILL get better and it CAN get better FAST if we listen to our bodies, feed ourselves nourishing foods, stop applying any lotions/oils/creams to our already overwhelmed skin, take supportive supplements, get plenty of sunshine and try to minimize stress!
Now, I am able to wear short sleeves, shorts, swim in the pool, workout and sweat again comfortably!
Sending you all so much love during this time!
kirsten soistmann says
Thank you so much for all this information. My daughter has been battling eczema, leaky gut, and full body hives. She is trying the TSW treatment you suggested. Thanks again for your help.
I started to stop using Topical Steroids and now I am experiencing TSW. I’ll try to do what you’ve done. I hope it helps.
Does this therapy increases the colouration of skin?
Nicolas Ignatiew says
Hi Caleigh !
Thank you for these precious advices, and what a wonderful job you’ve done ! Congratulation for that 🙂 I’m on my 3rd week of TSW and 2nd week of MW and I think your article can really help ! I noticed that the difficult stage for me is definitely the shower. I try to space shower as much as I can (basically when I don’t need to socialize I can spent almost a week without showering ^^) but when I have to, or when I really want to have this cold shower on the morning in order to feel great, then I will inevitably scratch myself 15 minutes after the shower, even if I take cold ones, and even if I take a bath instead (a bit better than the shower but still very itchy after). In general, I feel that ANY form of humidity (shower, rain, sweat) would make my skin feel super uncomfortable. My question: is that a typical effect of the TSW according to you or does my skin have a an allergy to water ? Did you have a similar problem with water and if you did, how did you manage ?
Thank you very much for helping us out ! 🙂
I am so happy you are healed.
I am in my 4th tsw year and I wasn’t healed yet. 4 months ago I started getting sunlight about 30 min dveryday and my skin healed completely within 2 weeks!
I wasnt in the sun about 3 weeks and I flared up again. I am just freaked out about winter! If I dont get sun i will flare up!
What do you do on winters?? I will be moving to Toronto soon and there will not be enough sun for sure??
Thanks for your story and advice. Did you ever feel fatigue and chills?
Hi, soooo glad you posted this. My daughter has started with TSW, following a similar history of steroids to yours, and we were in complete despair until we came across your post. It has given us the hope that recovery can be measured in weeks rather than months and years. We are following every aspect of your approach, plus a few extra bits and pieces. It would be REALLY good if you could forward the articles which you found helpful…Thanks!
I’m about to start my TSW after using steroid cream for 30 years on and off. More so that last 10 years.. I was wondering what multivitamin was used as I’ve nearly got everything you do and ready to start but would like to know the multivitamin before I do. I’ve already been taking Probiotic and other things you have mentioned. Anything you can send me to help would be greatly appreciated. my email should be in the blog when you receive this comment. I’m over the moon to read something like this.
It’s so refreshing to finally read a positive story about tsw. I’ve just begun weaning myself off steroid creams after using them since I was young and the stories you read are terrifying. I am already vegan so hopefully the diet changes will also work for me, do you have any articles or a diet plan you could share with me? I want to do everything possible to make recovery as quick and as comfortable as possible. Sending you positive thoughts and Thankyou again
Thank you for the article it is very informative.
Glad to hear you are healed.
Could you possibly send me some information you have on how to heal quickly?
Very much appreciated.