If you’ve ever wondered why your skin’s not healing – Topical Steroid Addiction (TSA) and Topical Steroid Withdrawal (TSW) could be one reason why.
Also known as “Red Skin Syndrome” and “Steroid Induced Eczema,” Topical Steroid Addiction (TSA) and Topical Steroid Withdrawal (TSW) is never pretty; this often happens when an individual overuses topical steroid creams and experiences the negative side effects when it’s withdrawn.
Common symptoms include: weeping, burning and intense flare ups when steroid cream is discontinued. Many times, overusing steroid creams can lead to a cycle of addiction, where doctors begin prescribing more potent steroids to treat the worsening skin condition.
To bring more awareness to this – Tracy Scarpulla has written a fabulous blog post for me on this topic. Her story is incredible – and she’s been through SO much! She’s also learned a ton – and has a wealth of knowledge to share. I hope it helps shed more light on this topic. Let her explain what flares up eczema 🙂
Here is what you’ll learn in today’s post:
- What Topical Steroid Withdrawal or Red Skin Syndrome is
- What symptoms occur in Topical Steroid Addiction (what makes eczema flare up)
- How to heal from Topical Steroid Withdrawal
- How long Topical Steroid Withdrawal lasts for
- What supplements you can take for Topical Steroid Addiction
- What Tracy’s Red Skin Syndrome treatment experience was like
Be sure to read her section on what things speed up TSW healing – it’s very enlightening!
Without further ado – here’s Tracy’s story:
I was diagnosed with eczema at 6 months of age and I just turned 42 years old. Needless to say I have an extensive history of eczema. I am first and foremost a woman, a wife, a mother, and a nurse. I have been a Registered Nurse since 1997 and specialize in Emergency Medicine and Pediatrics.
The eczema I had was typical – it flared during the winter months and gave me mostly dry patches on the inside of my elbows, behind knees, and on my neck. And then there was the ITCH! Rubbing, slapping, and other alternatives to scratching just never worked. At the age of 10 or 11 my mother took me to an allergist.
We asked what can cause eczema to flare up? I remember him telling her that I needed to go on an elimination diet. He said it was crucial in identifying my triggers. Unfortunately, my mother found it too stressful to cook food separate from the rest of the family so I never found out what all my triggers were. My allergist said it was almost impossible to figure out what was triggering my eczema without going off almost all food and then re-introducing one food at a time.
As a child, I wanted so desperately to stop itching. I was also beginning to become embarrassed by my eczema. That is when my mother took me to a dermatologist and he said my eczema was severe enough to warrant a tube of steroid cream. My skin quickly cleared up within a week.
Using Steroid Creams for Eczema
30 years later I was still using topical steroid creams – using more and more to get the same effect. I came to a point where the creams no longer were working. I would slather the creams on all over and yet my skin was in a horrible painful state. I was also suffering with a “fatty liver”, inability to lose weight, reflux, and severe fatigue. Since anything applied to the skin is absorbed into the bloodstream, there is no doubt in my mind the steroid creams caused adrenal fatigue, gut problems, and liver issues.
I also became very ill after giving birth to each of my children. I could barely function after my third child and was told a year later that I needed to be hospitalized for intravenous immunosuppressants. Given my medical background and my husband being an ICU nurse, we both concluded immunosuppressants would only make me worse, not better.
We instead decided to start traveling, looking for other answers. During the last 7 years, we came upon more natural approaches to health. I tried acupuncture, herbs, and all sorts of alternatives. I did happen to fix my liver with milk thistle and my gut issues with a natural approach to food (using the Weston A. Price Foundation guidelines to eating). I was able to lose weight and started feeling significantly better overall.
I was only using the over the counter hydrocortisone when my youngest turned one, but I was going through a large tube every 2 weeks. I started gaining weight again and my childhood asthma returned with a vengeance. I was not always strict with our diet, so I started becoming very strict, yet my skin was just getting worse by the month.
I unfortunately followed mainstream medicine during that time. As many of us know, diet and the health of one’s gut were not addressed unless there was a known food allergy.
The Tipping Point
My tipping point was Valentine’s Day of 2013. I was home from work and itching all over. I was at my wits end because I had to work the next day and I was wondering how I was going to manage while itching so badly, yet again.
I was on Facebook and going through the GAPS diet page. And there was a recent post by a mom of a toddler suffering with severe eczema. She posted how she tried GAPS but found no relief – instead she discovered that her son was suffering with Topical Steroid Addiction (TSA) and was now in the throes of Topical Steroid Withdrawal (TSW), since stopping the steroid creams altogether.
I was fascinated of course and went to visit her blog where I immersed myself in for the next 3-4 hours, reading every single post. I then went on to other TSW people’s blogs. I was in tears, seeing myself in these people. My eczema was just getting worse and worse with no end in sight. Stop the steroid cream? Were they crazy? I couldn’t live without my tubes of creams! I had multiple tubes of course – in the bathroom, in my purse, in my locker at work, and of course by the bedside.
You see, before the 1950’s when steroid cream hit the shelves of pharmacies, eczema was rare in adults. In fact it was known as a childhood “illness” that the child would outgrow into adulthood.
I was told by many dermatologists that eczema in a child is caused by allergies; whereas with adults it is autoimmune. I kept asking how that was even possible. How does it go from being caused by an allergen to being autoimmune where the body just starts attacking itself? Of course, no one could supply an answer.
But this one dermatologist out of Beverly Hills, California known as Dr. Marvin Rappaport studied this worsening eczema in adults and determined it was the steroid creams causing the red, irritated, itching skin.
Here’s my outlook: the steroid creams reduce inflammation and cause reactions in the skin to start healing. The steroid creams cause further damage, needing more and more cream to mask the damage. If you need to apply steroid cream longer than 1-2 weeks on any one area, then damage will start to develop.
All my dermatologist told me it was OK to use as long as I needed to. They prescribed refills for YEARS at a time, never questioning my usage.
Not all adults and children develop TSW. It seems to be random (although I do not believe it is). I have a distant cousin who uses topical steroids in the winter only a few times and has never had worsening eczema.
How did I decide to do Topical Steroid Withdrawal?
Going into withdrawal (TSW) was not a hard decision to make. I threw away all my steroid creams that very day on February 14th, 2013. I researched what other people went through and made plans for a long 2-3 years of painful withdrawal symptoms.
What are the symptoms of Topical Steroid Withdrawal?
They may differ from person to person, but the most common ones include:
- bright red skin that spares the palms of the hands
- swelling all over
- oozing serous fluid from scratched areas
- severe nerve pain all over the skin
- the worst itching of your life (yes it does get worse!)
- hair loss
- adrenal fatigue
- hot flashes or feeling cold all the time with chills and shivers
- excoriated skin that just seems to fall off with the slightest touch.
What causes eczema to flare up? The severity of symptoms and the length of time one goes through this seems to depend on length of time using the topical steroids and the strength of the creams used.
And the whole time may not be marked with the worse symptoms. Some people go through 1-3 month cycles of flaring with weeks or months of relatively clear skin.
Others have continuous flaring with the severity of symptoms falling within a certain range from not too bad to so bad they can’t take it anymore; there seems to be no rhyme or reason to this.
What speeds up the healing of Topical Steroid Withdrawal?
There is an organization called ITSAN dedicated to spreading the word of this horrible condition and offers support though the use of their forums. However, I do not agree with them on some very fundamental issues; one of them being diet. How long does eczema flare up last? They are very clear that there is nothing that can help or speed up the TSW process except time.
While going through the first few months of TSW, I could not accept this. I was facing 3-4 years of suffering according to their calculations. I couldn’t accept there was nothing I could do. Even Dr. Rappaport will state that it will not matter what you eat – a healthier diet will not speed up the TSW process or stop an eczema flare. So I went on a journey to finding an easier way to get through this.
I tried the stricter diet with no change in my skin (but as many know, healing with food takes some time). So I enlisted the help of a Naturopathic Doctor. I specifically chose a certain one because he had a degree in cellular biology. I started thinking there had to be something wrong with the RNA of the skin cells – I was shedding like crazy and obviously making a ton of new skin cells, but these new cells were not behaving like they should.
If it was a matter of just damaged skin tissue like as in a second degree burn, then healing of the skin (with or without scar tissue) would occur within 60 days. But 60 days had long since passed and I figured there had to be something wrong with how the cells were replicating.
They were replicating the damage cells’ instructions on how to act therefore my skin would remain damaged until the RNA was healed and reprogrammed. I was not entirely correct with my hypothesis but I was very close. My ND stated that there was a gene mutation (MTHFR) that inhibited the activation of B12 and folate which set off a chain of reactions that inhibit the process of methylation and the production of glutathione. If you are not familiar with glutathione, it is necessary in every single cell of the body for repair and cleansing.
My specific gene mutation basically meant my cells were only repairing at a 30% rate compared to normal people. So all the steroid creams I put on my skin were not being cleared from the cells at a regular rate. The chemicals were just stagnant and my skin just became more and more irritated over the years of use. And then there was the issue of the internal damage to my liver and other organs. This gene mutation affects ALL organs and all cells.
I was 8 months into TSW when I learned about this. I never had a decent break of my symptoms from day 1. I had quit my job and was nearly house-bound. I couldn’t get off the couch most days. My kids were paid to do ALL the housework and my husband worked 60 hours a week on top of doing the grocery shopping and other errands. My life was pretty much in the toilet and I feared I had many more years to go before I was finally healed. Well upon learning that I needed just a few supplements, I was all in.
Moisturizer Withdrawal for Eczema
At this time there was a term called moisturizer withdrawal (MW) circulating among the TSW blog world. Some people swore that by using nothing at all on the skin their swelling and pain reduced dramatically, which made it easier to deal with the withdrawal process. I figured this made sense for someone like me who had this gene mutation – putting all that Vaseline on my skin was only inhibiting healing, not helping. However starting moisturizer withdrawal meant very tight, painful skin for at least 7-14 days. Some people said it was worth it while others quit after a few days stating they couldn’t deal with the pain.
Here is what I did: I went to my mom’s house with my daughters while hubby went on a road trip with our son and my dad. I started my MTHFR gene mutation supplements and stopped all creams. In fact I went to my mom’s with only Neosporin with pain relief to be used on my neck only. I brought my ice packs and some over the counter pain meds like Tylenol and Motrin. My mom helped care for the kids while I basically stayed on the couch with my ice wrapped around my neck and a blanket to ward off the chills.
I got up once a day to go for a walk but that was the extent of doing anything for a week. Within 2 weeks my skin went from being a 9/10 in severity to a 3/10. Yes, it was a miraculous change! All within 2 weeks! I had my life back and 10 months later I am about 95% clear. I have only suffered mini-flares on small parts of my body lasting a few weeks to only a few days. These mini-flares change from time to time but I have never suffered another full body flare like I did those first 8 months.
Methylation, Gene Mutation, and the MTHFR mutation
Of course many of the others with TSW followed my progress on the forums and my own personal website. I was only beginning to learn what methylation was and how my genetic mutation affected me. I offered what I was doing but made sure to express that others should seek out a professional for testing and treatment. It was my theory that those with Topical Steroid Addiction were suffering with the MTHFR mutation hence causing the severe skin problems. It would explain why some people can use steroid creams without any problems and yet others just got worse and worse.
Many people started getting tested and others who couldn’t get the testing started taking the supplements I was taking. I was unaware at the time that other genetic mutations can be at play and would require a whole different treatment than what I was taking. There were a few people who had bad side effects from the active B vitamins – probably caused by over-methylation. Over-methylation can occur when taking too much of the active B vitamins.
It is an individual response – some never develop over-methylation, while others do even at low doses. It is a very complicated issue – one that requires a medical professional trained in methylation mutations. The majority of people who sought testing came back positive, and many people reported a significant improvement in their skin once starting treatment. This is a very new and developing area of science. Not all is known yet how our genes work and affect us.
Do you think you have Topical Steroid Addiction?
Only you can answer that. The majority of doctors and dermatologists will tell you that Topical Steroid Addiction is not “real”. Many people have had difficulties finding support from the medical community. Many parents who have stopped steroid creams on their children have been chastised by their paediatricians for doing so (a few have even had to deal with Child Protective Services being called on them!).
In essence, it comes down to each individual determining that steroid creams no longer help – they keep using more and more without any relief – suffering more and more throughout months or years.
What should you do if you have Topical Steroid Addiction?
My opinion is this: READ, READ, and READ some more – read everything you can about Topical Steroid Addiction (TSA), Topical Steroid Withdrawal (TSW) and what causes eczema flare ups. My blog has a list of other TSW bloggers. I literally jumped from one blog to the next in the earlier months, immersing myself in this process.
Next, develop a reasonable plan – plan for the worst and hope for the best. Seek out a doctor, naturopathic doctor or nutritionist who will support you and help you develop an eczema flare up treatment. Learn what you can about genetic testing and even look into oral immunosuppresants. The immunosuppressants come with a long list of bad side effects, but many have been on them in order to work (as taking leave from work is not an option for some).
And last – seek out personal support. Join a forum (like www.nomoresteroids.com), join Facebook groups, and tell your family and friends what you are about to do and ask for help!
Here’s a good question and answer video from Dr. Rappaport regarding Topical Steroid Withdrawal to give you a good start on some background info:
Will my eczema be gone once through the withdrawal process?
There is no way to tell for sure. But I do know that I would prefer my “old” eczema from when I was a kid to what I have been going through all these years. Allergy testing and elimination diets would be helpful as well.
How long will my withdrawal take?
Again there is no way to know for sure. There are some “guidelines” offered by a few different doctors. But it truly depends on how much you used, for how long, where you applied it, and what potency you were prescribed. A rough estimate is one month for every year used. For me, that meant 30 months. However, other people I know who used steroids for similar amounts of time as me, were still having flares after 3-4 years of withdrawal!
I have even heard of people suffering a continuous long flare for over 24 months. Yes, that is a scary thought and I had panicked a few times hearing of this when I first started. But after finding a huge amount of relief at my 8 month mark, and being almost healed at 18 months in, all I can do is recommend you look at what others have tried and then explore all your options.
Will diet help my skin during the Topical Steroid Withdrawal process?
At first, on the surface it may not look like it. It may not initially help with the symptoms. Some foods will trigger you to itch more. Others like alcohol will cause worsening redness and flaring in many. However, deep down inside your body, healing is occurring. And what science knows about healing is that we need certain proteins and nutrients to heal.
I worked in a burn unit once – the burn patients were given high protein meals formulated with specific nutrients and vitamins to help with healing. A proper Red Skin Syndrome diet is important.
We are what we eat, so eating well can only help your body in the long term.
“Let food be thy medicine and medicine be thy food” – Hippocrates.
For more information about what causes eczema flare ups in adults, my journey and others, please visit me at www.stoppingtopicalsteroids.blogspot.com.
Disclaimer: I am not a doctor and am not providing medical advice. This blog post is for information only. If you need treatment, please seek out the advice of a medical doctor. If you are taking ORAL steroids (such as prednisone for eczema flare ups or decadron), please be aware that stopping oral steroids suddenly can cause severe harm and even death. If you are taking oral steroids, please see your doctor before stopping or decreasing your medication.
Join my group coaching program for more personalized support, learn more about my Conqueror Dry Skin Soothing Balm or visit my eBook links below to learn more about how you can heal your skin:
- The Elimination Diet: A Guide to Conquer Eczema & Food Sensitivities
- Healing Eczema: Why Dieting Is Not Enough
- The Power of Thoughts: How Mindset Shifts Can Help Eliminate Eczema
- My Detailed Eczema Healing Treatment Plan
Click here for more eczema resources or visit my list of recommended products for eczema!
Abby is a Registered Holistic Nutritionist who helps clients achieve optimal health. She is passionate about seeing people use health and nutrition to transform lives. She hopes that her experiences and knowledge can help educate others on natural remedies that will help eczema. Follow her on Twitter, Facebook, Pinterest, Instagram, or YouTube for more updates!
Disclaimer: All the information found on this website should be used for informational purposes only and is not intended to replace proper medical advice. Always consult a qualified health care provider before embarking on a health or supplement plan.
Thank you for Thisbe Tracy. I threw away my steroid creams in January after 21 years of use since I was an infant. It was to the point where I had a dr. prescribing clobetesol for my face. In January I went through TSW on the inside pits of my elbows. I am still experiencing it on my face where before I never had eczema on my face. I have flared from whole body to chills, feeling sick, vomiting. I have also been on a strict diet change since Jan. Seeing a new dr just placed my on prednisone taper which of course caused a reflare after. Now I am trying to just stay positive that eventually it will ease and get better along with daily baths. Stories like yours help with that. Thank you.
very interesting, thanks for sharing this tracy!
I’m in the same boat. Frozen flannels are a life savour – they really do relieve the maddening burn and itch – just wet them, wring out, fold up and freeze.
I’m also only lightly washing my face (and now hair) with warm sea salted water and rinsing with cold fresh water to avoid putting anything on or have it run from my head to my face.
Plus, I’m taking quite a lot of vitamin C and other things (D3 for example) as well as my very healthy diet anyway (save coffee and alcohol!)
I’m a couple of weeks and have shed so much skin from my face it’s scary!
Still red, bumpy and flaky but less so, but I will NEVER use the cream again.
Tracy, thanks for sharing your story. I am going through TSW now had have been having quite a bit of difficulty during the winter months. Can you comment on what type of supplementation and diet/lifestyle changes you made after learning of your MTHFR mutations?