My Topical Steroid Withdrawal Syndrome Story
I was a wee 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 little 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.
Researchers now say that itching comes from the same sources as pain so I know now that I 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 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.
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
- Eye dryness and irritation
- Skin atrophy (often manifesting as “elephant wrinkles“)
- Hair loss (head and/or body)
- Insomnia and altered body clock
- Appetite changes
- 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.
- 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!
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.
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
Do you use topical steroid cream for a skin ailment?
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
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© 2011 Joey