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. 🙂
Caileigh’s story:
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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.
Back story:
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.
The redness had gotten a lot worse than this (but before photos are painful to show)
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.
Overall:
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!
Healing after TSW
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!
Hi, this is amazing, I will try it right now – honestly I hate moisturing and I feel that my body doesn´t like it. So from today I will not cover my skin with anything.
Martin from Czech republic – Europe.
Good luck, Martin! It will be difficult and uncomfortable for two weeks at least but was definitely worth it for me–thinking about you and wishing you all the best on your journey!
Hi Caleigh!
Thanks for the post. I am curious about your reaction to coconut oil;what would happen? I’ve been using coconut oil for about 3 months now and I can’t seem to get off it. My skin goes nuts if I don’t apply. I’ve been on a diet like yours for 3 months as well now and the healing is taking really really long. Any advice?
Hi Irene,
Good to hear from you! I had been using Aveeno lotion on my body and a natural Shea Butter on my face and neck for a few years and then right before TSW, I switched to using coconut oil. I noticed that the coconut made my skin incredibly itchy and made the redness even more inflamed, so I decided to stop using it and started moisturizer withdrawal. Within 2-3 days, the redness had decreased SO much and white (not yellow) flakes formed. Some of the redness disappeared on its own without flaking first. I noticed that the areas that I moisturized heavily (my face and neck, which I moisturized 3-4 times a day) were very flaky the first 1-2 weeks of MW but the redness completely disappeared. By 2-3 weeks into MW, the skin on my body was near perfect and my face just looked a little bit dry but no longer red or flakey.
Your skin may react and “go nuts” once you don’t apply the coconut oil, because it is dependent on the coconut oil. In order to truly heal (and heal faster!) I recommend not using any moisturizer or oil. Your skin might appear to get worse before it gets better but this will help your skin heal much faster (in my opinion.) After 2-3 weeks of MW, as I mentioned above, I would put some drops of oil (avocado, jojoba and vitamin E) in my bath along with the epsom salts as a way to sort of moisturize without applying anything directly to my skin. That said, all of our bodies are different so it is up to you to determine what works best for your body!
Good luck and I hope this helps 🙂
Caileigh
Thanks so much. I’ve decided to go off the moisture and see what happens. My face is really sensitive and nothing can be applied on it (anything I put on it I react). Looking back in hindsight it’s no wonder that my face has healed up much faster than the rest of my body. I have been wondering whether to go off the creams and now thinking I should have listened to my body long ago. Good luck with the rest of your journey! Glad to see that you’ve healed up fast 🙂
Hi, I have been dealing with eczema for sometime now but after I stopped taking prednisone. I first tried last November but because I was following a horrible elimination diet at the same time that I was TSW, I ended up at ER dehydrated and very weak so they put me back on prednisone but of course the side effects came bacl and I turned into a plum because of tghe water retention plus other side effects. I went to see a Naturopath and he started helping me with many supplements in order to start the prednisone withdrawl slowly. I have been out of prednisone for 2 months now but of course my face, arms and legs turned red again. I don’t feel irritated like last year but now the dryness is driving me crazy. I cover myself in Mustella and I also use an organic balm made by a local farmer and that’s what keeps me going. I have been tempted to do what you did about MW as I have read other stories about it but I am wondering if you need to prepare yourself to be almost laying down all the time because ofthe dryness that don’t let you move and how you managed not to scratch the flakes when you look at yourself covered in them! When I woke up my neck,hands and a bit on my arms are flaky. My face is not flaky but tight and feels hard. I shower everyday because I can’t stand the feeling. Did you use a brush for the flaky skin? Was it painful? I also have shakes on my legs. I feel like if they were very heavy and painful especially the upper part. Claudine
Hi Claudine,
I hope you are doing well right now! I apologize for a late response, I did not see your comment until now!
I have tried my best to answer your questions: I was able to work remotely during this time and spend time at my parents’ house, as I mentioned, so I had very little responsibilities during the MW phase, which made it a lot easier to focus on healing and keep stress levels low. It definitely wasn’t a comfortable process but I was able to stay very positive with the support of my friends and family and I believed strongly that I would heal in rapid time. I would only get very itchy when I was too hot or hungry or dehydrated but the rest of the time I was able to resist scratching. It is tempting to pick, but you must keep in mind that it disturbs your skins’ healing process. My face especially felt very tight but over the course of two weeks it felt MUCH better. I also did not shower or wet my skin during MW because I thought that that would disturb the healing process and I think it was a good thing that I followed my intuition on that one. I tried using a brush one day but it seemed to make my skin worse and it appeared to strip my skin of its natural oils so I decided that it was counter-productive to healing. I am very happy that I did MW because I think it helped my skin heal faster. It is tough but the key is to stay positive and love yourself throughout the process. I have come to believe with more time that the answer to eczema and skin conditions is self-acceptance. It can be a long journey to get there but remember to smile and try to enjoy life despite these difficulties.
Let me know if you have any more questions <3
Thinking about you and sending you lots of love and healing energies during this time!
Caileigh
Hello sgain, my the only question is regarding food. Could you please specify what you eat during TSW? like only vegetables and fruits? or shat about butter and buckwhrst bresd that is withiut glutan. Thank you
Hi, I’ve been on Moisturizer withdrawal for about 2 weeks now and I’ve followed everything that you wrote, the diet, the exposure to sun and the not putting anything on my skin. I have eczemas only on my face since that was the only area I used the steroids on. What I wanted to ask is, in all the blogs I’ve read, including yours, I see that there was a lot of flaking and shedding of skin, and all the blogs say that that is good because as I’ve read on one blog, ” think of your skin as an anion and the more it peels the more you get closer to getting a nice, new skin”, however the skin on my face doesn’t shed or flake much for that matter, except the lips and the the area around it so I was wondering if that was normal. Also, I wanted to ask, how long do I have to go through Moisturizer withdrawal? Thankyou
Hi! Was just wonderinfgyou have any pictures of your healing process? I have just began withdrawal and it’s hard as you know to see yourself like this. It would give me confidence to see some before & after pics. Thanks so much for all your advice, hope your skin is still well x
Hi Caileigh-
I am right in the middle of a terrible bout of Red Skin Syndrome. It has really attacked my ankles and legs as well as my arms. I have quite a bit of fluid retention in my legs which makes it very uncomfortable. My skin is unsightly to say the least. Mountains of shedding skin. I too am working with diet and supplements. I have been putting some oils and salves on my skin that have essential oils in them. I will try not to apply anything and see if I have the same good luck that you did. I fear my case is quite extreme as I have the red sleeve on my arms and legs. My family is concerned of course and some really want me to go to the doctor but I know what they will give me so at his point I am just going through it! I wondered if you had the swelling and fluid retention. You are much younger than I am…I am 61 but have been very active up until a couple of months ago. I have been trying to find anything to accelerate my healing, so thank you for your post. It helps to know I’m not alone! Glad you are back to being healthy!
Thank you so much for this post! I think im going through this stage and its so encouraging to see this article. It really made my day and I hope you keep sharing your experiences with others.
The only problem I have are my face & neck, My face gets itchy everyday & I’ve left the moisturizers off.
Caileigh, thank you for this amazing post! I cannot thank you enough. How can we follow you? Do you have a blog or anything?
Also- I’m “weaning myself” off of moisturizers. QQ about your elimination diet: did you eliminate nuts and eggs as well?
I was wondering if I could still use my carmex for my lips during moisturizer withdrawal? My lips are drier than my skin & feel uncomfortable. Will it affect my skin? Thank you
Hi Caileigh: Your story is very encouraging. I am 50 days in being steroid free and 29 days in from moisture withdrawal. The MW was the best decision ever! I am following a very similar plan as yours and was doing wonderfully in my recovery. Earlier this year from January to the end of April (2016) I was going through the most horrific TSW with massive flare ups every week, constant Staph-MRSA and Strep A infections, and 95 of my skin turned dark red. The skin peeling was profound and the oozing was so bad I had to wrap my body in pampers. The skin on my face was almost non existent. The worst part of it is I did not know it was TSW, nor did any of my many doctors apparently. By late April I realized I was getting nowhere with these doctors so I quit all antibiotics and went back on the steroid cream just on my face. And I juiced vegetables only during May. I seemed to have recovered miraculously. However all the rashes in their varying manifestations gradually returned in full force by June. In August I ended up in the hospital due to a severe infection of the rash on my arms and in the palms of my hands of all places. It was the MRSA ans Strep A again. After the hospital I stumbled upon the ITSAN website. Wow! I was so happy and amazed to learn what this is. Finally had the answer and began TSW that next day. As I researched all I could find on the subject I took what was working for everyone and applied it to my plan. This of course included your info here. It has been a slow but steady recovery. My body is pretty much healed. The skin on my torso is completely normal.. My arms and legs are still very dry but barely flaking. So day 44 to 48 of my TSW even my face almost normal except for around my mouth. There was still some flaking skin. ON day 49 my face flared on one side of my mouth. Day 50 it has spread to the lower half of my face. Its crusting and leaking. Very painful. Have you experienced any flare ups? If so how severe and how long did they last? Of the hundreds of recoveries I have read about your is definitely the shortest. The next runner up is 5 months that I have found. I want my recovery to be as short as possible of course. I would love to discuss with you more for sure.
Thank you
Hi i quited steroid cream two days back… now my skin bcum red itchy .. how many days it takes to cure
I am so happy for you! Your are beautiful!
My question is I am 8 months withdrawal and had a terrible flare.
It has never appeared on my face or scalp… why now?
My left ankle is swollen and both my palms and feet are still peeling with deep cracks!
Right now I’m just so embarrassed… I look horrible!
I get these horrendous red raised dots that itch like crazy and blend together!
I am just sad… I thought I would be further along!
Any ideas?
Thanks:)
Susan
Hey Caileigh,
Would you please email me all of your articles and research sources you have collected to help with your healing? I would like to start on my journey again. I previously went through TSW but had to use TS during my nursing studies on my hands. I left my nursing studies and am currently going through TSW once again. I appreciate your story and help.
I don’t understand why Calleigh’s not answering back anyone, unless our questions are old, but Cara Ward another topical steroid withdrawal survivor always does!!!!!!!!!
Hey i know im late but im 3 weeks in and ive been using TSC for 5 years. Now im in a diet only consuming fruits, vegetables and lots of water. I am taking wheat grass with supplements like b1 b6 and C. Also salmon fish. Ive been moisturizing my skin till now and i have improve by taking out oils and etc. Question is that if spinach and broccoli make it worst? Ive been eating that alot but i don’t know now. Im very red and do have flakes alot coming out, showering every other day. Any advice please, do i really need to go off 2 weeks without moisturizing. Please let me know so i can heal faster
Thanks for all this Caileigh….did you have any remaining tannish/brown dark spots from the TSW…did they disappear or did you have to use something to lighten them. THanks.
Hello, I know this post is really old, but I hope I can get a response.
I’m about 2 weeks in of TSW now and I’m just learning about how people have gone through this. I stumbled across this blog and was hoping I can get some answers to some questions.
If you could please tell me if you washed your face at all while having TSW symptoms? And did you put anything on it?
And while you were recovering, how was your skin during the recovery part? When it was nearly gone. Like what were the stages of healing? Did you experience any rough skin that wasn’t red before it turned smooth? And did your skin smooth out itself or did you put a moisturizer?
Thank you for sharing your story and hopefully answering my questions!