My Topical Steroid Withdrawal Syndrome Story

I am raising much-needed awareness of Topical Steroid Withdrawal Syndrome (TSWS).

Eczema afflicted at age 3

Childhood Eczema

I was a little three-year-old in the above picture and as far back as my six older siblings remember, I had progressively worsening eczema from birth. I do remember my tiny legs and arms being rashy, sore and itching.

By age five my mother began to put long knee socks over my arms at night and pin them to my pajamas. I vividly recall chewing holes through those socks repeatedly to satisfy the urge to scratch. I don't know if she put steroid cream on me at that age as it had been invented shortly before my birth in 1955. My sisters are not sure either, but they do remember a stinky coal tar ointment applied to my bad spots.

To this day, I detest anyone telling me to stop scratching. It is like telling someone to stop breathing, in my opinion, as the scratching does ease the annoyance for a while. The important thing is how I scratch, and that means short nails, gloves when I was really bad off and keeping the skin clean with Epsom salt baths or a dab of apple cider vinegar.

More research are finding that itching comes from the same sources as pain and is not just psychological or habit, as some have theorized. I strongly encourage parents to choose a safer way to handle a child scratching as it's impossible to not scratch. There are methods to ease it with natural non-steroid ointments, eczema clothing, tube wraps and more.

My former steroid cream "fix"

My Collection of Topical Steroids

For whatever reason, topical steroids were considered non-systemic (penetrating the bloodstream) by most in the medical community, safe to use indefinitely and to step up to more potent ones if needed. We now know thanks to increased awareness and studies by concerned doctors, they are potent, systemic and need to be monitored the same as oral steroids.

I don't know for sure the name of the topical steroids my mother used on me as a baby, but I do remember by age 4, having a clear-like vaseline ointment rubbed on my arms and legs. According to the medical community, the ointments are stronger and more absorbent.

"Topical corticosteroids have been ranked in terms of potency into four groups consisting of seven classes. Class I topical corticosteroids are the most potent and Class VII are the least potent. Efficacy and side-effects are greatest with the Class I ultra-high-potency preparations which should only be used for limited time periods (2-3 weeks). Representative preparations by group are listed in the table below. These groups may vary depending on the formulation and concentration and should be considered approximate. In general, ointments are more potent than creams or lotions. Potency is also increased when topical corticosteroids are used under occlusive dressings or in intertriginous areas." World Health Organization

These are the topical steroids I can remember using for 40+ years:

• Triamcinolone acetonide 0.5% (Kenalog, Aristocort cream) (Class III)
• Hydrocortisone valerate 0.2% (Westcort) (Class IV)

The picture above is the collection of my topical steroids at age 55, plus a couple of anti-fungal medications prescribed by my doctor in the summer of 2010, thinking I had scabies and fungal rash. The inserts shown in the pic do tell the side-effects but there truly needs to be an added caution of topical steroid withdrawal.

I had spreading rashes and panic escalated when doctors kept guessing at a diagnosis for my mysterious condition. That panic drove me one night to search for "steroid cream side effects" and it brought up a website called "Addicted Skin" by Kelly Palace. She had pics her skin and explained how she had used topical steroids and now was going through withdrawals. I knew that was me! She had discovered a dermatologist who knew what it was right away, diagnosing her with Red Skin Syndrome (RSS) also called Topical Steroid Addiction & Withdrawal (TSA/TSW).

Kelly and her dermatologist eventually co-founded the non-profit called International Topical Steroid Addiction Network (ITSAN), which grew by leaps and bounds, raising up more leaders so Kelly could go back to full-time work, entrusting those comrades to continue the crucial outreach of the non-profit.

Mysterious itchy red bumps

Painful Red Bumps and More

This is a pic of the mysterious alien red bumps that appeared in the summer of 2010 and had the doctors stumped. This was actually the third time in my life (ages 13 and 23) that I had unknowingly suffered the rebound effect of this potent drug. I used less often during the summer and the outbreaks were both in early fall. This one was later August which again would explain it as I cut back on using the steroid cream in summer months. I obviously fixed the eruption by using steroids again, not knowing that using it on my hands would stop any flaring part of my body.

The red bumps came back several times throughout my withdrawal along with various other alien attacks on my body that had my doctor scratching her head until she actually read the cited articles about TSWS. Tears filled her eyes when she realized what was happening to me and did everything possible to help me through the steroid hell for the next 2+ years. Thankfully, my doctor was a huge support and help to me during an awful time in my life, but not all doctors are supportive and push hard to prescribe steroids, only exacerbating the cycle of suffering.

Here is a list of typical symptoms after cessation of topical steroids:

• Skin flushing bright red, resembling a sunburn
• Visible and measurable flaking of skin – appears to be ‘snowing’
• Oozing exudate
• Skin cycling between oozing, swelling, burning, and flaking
• Red sleeves (arms/legs become red and inflamed, sparing palms/soles)
• Thermoregulation altered (feeling too cold or too hot)
• Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.
• Nerve pain, sometimes described as “sparklers” or “zingers”
• Enlarged lymph nodes
• Edema
• Eye dryness and irritation
• Skin atrophy (often manifesting as “elephant wrinkles“)
• Hair loss (head and/or body)
• Insomnia and altered body clock
• Appetite changes
• Fatigue
• Emotional fluctuations, depression, anxiety

The Uphill Steroid Withdrawal Journey

The first pic is my arm off steroids after 20 weeks of no steroid cream for the first time since I was young. The rest are pics from the early months of my journey which took a turn for the better at 27 months post topical steroids. I caved in my mid-seventh month and used low-dose oral steroids to heal the skin but it only came back with a vengeance after a month of trying that and tapering off, so oral steroids were no better and probably worse.

This was truly the worst nightmare I could ever dream of going through. My weight dropped quickly along with so many other symptoms that freaked me out. A common symptom that comes with TSWS is large lymph node lumps—I had golf ball size ones in my groin that are now the size of large grapes. As I write this, I am 33 months post TS and still flaring off and on in my unhealed areas but for the most part, I am much better and able to go without any medication for the nerve pain and itching since mid-December 2012.

VERY Swollen Feet In Healing Process

Painful Edema

The Aftermath

• Update 2/3/15: I am now 53 months post topical steroids and have slight flares on my upper legs but the healing is evident although very slow, my body is healing itself.
• Update 5/28/15: I am now 57 months TSW and my one bad area of upper legs is finally healing! The lymph node lumps are still shrinking and itch more in the morning when I first get up and for a few seconds off and on throughout the day but it's so minimal to the 24-7 itch I used to have. I'm getting there!
• Update 2/18/16: I am healed since December 2015 and wanted to make sure that my skin did not act up anymore! Finally, almost 6 years of recovery but I'm so glad I made it through to a life of no topical steroid dependence. My bones and eyes, however, have taken the brunt of the side-effects as I have osteoporosis, osteoarthritis and gel eye floaters.
• Update 7/23/17: My skin is great and needs no moisturizer or special anything as it healed from steroid-induced Red Skin Syndrome. My bones, however, are not good along with my tendons. I am in therapy for chronic tendon issues in my ankles and feet and cannot tolerate cold in my bones due to osteoarthritis. I continue to raise awareness to help prevent this travesty in other people's lives, especially children.
• Update 9/7/18: My skin is great still since I stopped all forms of steroids. My doctor has documented Red Skin Syndrome with this ICD 10 Code "(L98) Other disorders of the skin and subcutaneous tissue, not elsewhere classified"...in my medical records and I wear a medical necklace that says "no steroids."
• Update 1/30/20: My skin is still great, no rebounds!
• Update 5/15/26: My skin is doing well. ITSAN has finally acquired an ICD10 Code for TSW! A great victory! Read about it here. 

Issues I'm still having are bone, muscle and tendon problems. Some tests showed thickening of tendons and I was told I have chronic plantar fasciitis which causes my feet and ankles to be stiff, painful and tight. My body aches severely at night which is hard to determine which issues are causing it or all of them? Thankfully, I've found that CBD oil in a bedtime tea helps reduce the pain and greatly helps my sleep.

Final Thoughts

For the rest of my days here on earth, I will do whatever possible to bring awareness to this unknown (more appropriate than rare) medical and social travesty. My support group friend wrote about Steroid Addiction for Wikipedia and I'm very glad it's getting more PR. The TSWS awareness snowball is growing and more medical providers are changing their views and practice of prescribing Topical Steroids, thanks to ITSAN and its many members who are utilizing social media to sound an alarm on this preventable travesty. 

My prayer will be a thing of the past in the not-too-distant future as doctors learn about this through ITSAN's awareness campaigns, and exercise more caution when prescribing topical steroids. 2010-2013 will always be a memory of the "darkest night of my soul."

Please go to ITSAN.org for more info on Topical Steroid Withdrawal Syndrome or find support at the Facebook ITSAN Support Group. More videos on ITSAN's YouTube channel.
God bless. ~Joey

In DC advocating with ITSAN comrades 2016

Do you use topical steroid cream for a skin ailment? Post your answer in the comments. 

Safer Alternatives Than Topical Steroids

I get asked often what is a safer way to comfort TSW, eczema and other dry itchy skin issues rather than over the counter or prescribed steroids. I'm very aware that nothing outside of topical steroids will "magically clear" TSW (Topical Steroid Withdrawal) skin. Any claims from a product company, stating it will clear up eczema, TSW, psoriasis etc. quickly? Not true. If one uses something that does do that, be very diligent to find out the exact ingredients and even have a lab test them, as I've seen it all too often in the TSW support groups. Many TCM (Traditional Chinese Medicine) topicals have been promoted as miracle creams only to be lab tested with results of topical steroids in the ingredients.

 Yes, it's sad that anyone would take advantage of others who are suffering but greed seems to cloud people's sense of compassion and kindness in this vast and diverse world. For me, I used lots of white palm oil for moisturizing my dry, cracked TSW skin. I had tried coconut oil which made me itchier but some people really like it. I also tried other favorites such as good old vaseline, Aquaphor, Eucerin, aloe vera, shea butter, beeswax products, olive oil and even yogurt on my crying skin but for me, the white palm oil was received the best from my skin and it was in large enough amounts that it lasted me a while. 

Here is a pic of the one I bought at a local supermarket and back in 2011 it was $5.99 but price now ranges from $8.39 and higher depending on where you get it. The price of course was much better back then, but it's one ingredient and caused no discomfort to my skin. I made sure to always have clean hands or vinyl gloves on when using a tongue depressor stick to remove it from the container so as not to get staph and other bacteria mised into the new oil.

There are also some sponsor products on the ITSAN website that I have not tried but have read good things about them from some TSW folks. These are the ingredients for Balmonds Skin Salvation which seem to be helpful for some. The Cannabis Sativa may indeed help the crazy itch of TSW and that alone is a comfort! 

Here is one testimony of a mother of a TSW infant who is pleased with this safe cream for his topical steroid inflamed skin. He is now on the road to healing with some kind of comfort.

 List of Balmond's ingedients below. Olea Europaea (olive) fruit oil* Cera Alba (beeswax) Carthamus Tinctorius (safflower) seed oil* Cannabis Sativa (hemp) seed oil* Aqua and alcohol (from tinctures) Calendula Officinalis (calendula) flower extract** Chamomilla Recutita (chamomile) flower extract* Stellaria Media (chickweed) extract** Urtica Dioica (nettle) extract** *organic ingredients. **biodynamic ingredients. 100% biodegradable raw materials As a product made from natural ingredients such as flowers and seeds, this product can be subject to slight variations of scent and color. This is perfectly normal and doesn’t affect quality. 

Be very aware that skin may like something and later on, dislike something or everything or vice versa. At times in the later stages, skin may prefer nothing as mine did in the final stage of recovery, my third year. I stopped all ointments but still used old fashione oatmeal in a nylon sock for every bath as it made a very creamy, milky bathwater that greatly soothed my skin and kept the itch down somewhat. 

Everyone is different and every time frame for healing is different. Setbacks are common and others trying to predict fellow TSW sufferers method of comfort and healing is a big no no. We all walk this road together as overcomers but we are all indvidually designed and need to remember that in every stage of TSW, no matter how long it takes. I'm forever thankful and indebted to ITSAN.org for their contiuous surge forward to help the suffering, preven topical steroid withdrawal, educate the medical field and fulfil the dream of ending TSW!

February 3 is TSW Awareness Day and ITSAN’s 11 year anniversary as an incorporated nonprofit! We have come so far in the battle for recognition, accountability, and prevention. What can you do? We need your help to get Topical Steroid Withdrawal Syndrome officially recognized by your state, to help promote research and provide support and protection for TSW sufferers and their families! Join us on Wednesday, February 15, at 8:30pm EST, as Kelly Barta, ITSAN Executive Board member, shares how to connect with your legislators. Kelly will provide the tools you need to get a TSW resolution passed in your state or province. We know that TSW sufferers and caregivers often struggle to be heard and understood. Learn how YOU can make a difference! TSW Advocacy Training Wednesday, February 15 8:30pm-9:30pm EST Register in advance for the meeting here: https://www.itsan.org/advocate/ After registering, you will receive a confirmation email containing information about joining the meeting. Thank you! #tswawarenessday #tswadvocacytraining #endtsw #preventable #thisisnoteczema #topicalsteroidaddiction #tsa #topicalsteroidwithdrawal #tsw #redskinsyndrome #rss #topicalsteroidwithdrawalsyndrome #tsws #itsan #dermatology

 The early vision and longing of us vets of TSW advocacy was to see this largely ignored Topical Steroid Withdrawal Syndrome to be recognized and go viral. ITSAN.org and everyone who ever shared their story in order to slow and eventually stop this train of suffering can now see the fruit manifesting from those seeds after 10 hard years of this labor of love and pain. Thank you Kelly Barta for sharing your story "To Eczema With Love" as hundreds of others have done, baring their soul, emotions and skin to the whole world in order to bring the burning skin community and world hope and help! Well done my comrade. 👏

MY Childhood Eczema Story

 

I had very, young childhood eczema, like my older brother and dad. They grew out of it, I didn't. The difference, they didn't use topical steroids. My story.

https://patientslounge.com/conditions/My-Topical-Steroid-Skin-Addiction-and-Withdrawal-Story?fbclid=IwAR2H2uUEKLPfT5-GuRceRMMekcDvhFNlGGVDR_lzYTWyxSHsFcQECqc5kPU

Have You Gotten Your Eyes Checked?

I'm republishing this post from 2014 as it is impertinent that anyone that has used topical steroids for a longer time than two weeks, pay close attention to your eyes. There is a wealth of information on the ITSAN site as well. 

Update November 2021: I'm having 6 month check-ups on my eyes at my Opthamologist's direction to keep an eye on what may be macular degeneration, plus mild cataracts since my 2014 post. I'm now 66 years old and understand that this may be an age issue but I never rule out the long-term effects of lengthy topical steroid use. The rest of this post is republished from my first writing.

"You may be old or new to the Topical Steroid Withdrawal Syndrome (TSWS) world, but if you have not heard about how this drug can affect your eyes, please do read this blog post by Dr. Fukaya about it. My good friend, Dr. Fukyaya worked hard and diligent for years as a dermatologist and published much of his findings. 

http://mototsugufukaya.blogspot.com/search/label/25%20Ophthalmological%20complications

Whether you are a mom of a child withdrawing from steroids or a teen or adult, it is very wise to have your eyes checked as many are finding that they not only have skin issues but the eyes can be affected as well. This is not to say that eyes cannot recover as well as mine do seem to be less photosensitive now in my 42nd month of topical steroid withdrawal.

I've had some problems with my eyes since withdrawing from all topical steroid 42 months ago after 40+ years of using it. I didn't know about the eyes being affected so my first eye exam was about a year ago and it went quite well considering all the years this drug entered my body.

I had very dry eyes that burned and blurred a lot which I contributed to long hours on the computer and I'm sure that just added to the steroid induced eye afflictions. I also had swelling if I ate chocolate, bloodshot sore and dry eyes that could not tolerate any sunlight without pain and sunglasses. This peaked in my later months after the 27th month point of major improvements in my skin. It seemed to be a delayed reaction to the ts in my case but nevertheless, it was a problem that concerned me.

The eye exam took about an hour since you have to get drops to dilate them and then several tests to check out all functions.I very much dislike that word "dilate" these days but it did reveal a small scratch or injury on my right cornea that puzzled the eye doctor. He asked me several times if I had some type of injury or scratched my eye to which I replied "no" each time and finally said "it's the steroids, they affect so much it's crazy." He doubted it very much since he prescribes the steroid drops for eyes and has never seen that but he also does not know about topical steroid addiction like so many others in the medical community.

I left with the comfort of knowing at least I don't have cataracts, glaucoma or retina problems like some others in TSW have had. I cannot stress enough that reading this blog and having eyes checked is best sooner than later in the withdrawal process."

Steroid-Induced Adrenal Issue Awareness is Happening!