I am raising much-needed awareness of Topical Steroid Withdrawal Syndrome (TSWS).
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.
Read More From Patientslounge
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
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.
© 2011 Joey
Share Your Opinion and Thanks!
Joey (author) from Michigan on December 06, 2017:
Thanks Nell, I never knew I was dependent until I discovered the rebound I had if I went a week or two without using the steroid cream. That is the test, go without for a while and see if the red, hot skin kicks in along with the TSWS symptoms listed on the ITSAN.org website. I would not wish it on anyone.
Nell Rose from England on December 06, 2017:
Ouch! like anything else it should be in moderation as you said. I am lucky enough not to have got addicted to it, but glad you are okay now.
Joey (author) from Michigan on February 24, 2016:
I want to update to my commenters that I am fully healed as of December 2015 after 62 months of the recovery from topical steroid addiction. There is nothing known at this point outside of time for the healing process but I work hard daily to find more answers and hope that the message is out there enough that people will take huge caution when using corticosteroids for any reason! It's playing dangerous to use them for any length of time, especially on children as no one knows who will develop the dependency and now have steroid-induced eczema which will need topical steroid daily, weekly or even monthly to maintain which is dangerous for your body. The ONLY way to know if your body is addicted to ts is to stop for a few months as it can take that long for the withdrawal to really kick in. My skin has healed but I have been diagnosed with osteoporosis, osteoarthritis and have "gel floaters" in both eye corneas due to using this drug too long. The side-effects are well known but many derms either don't think it's much of a risk or they have no idea that using for months to years can truly cause addiction. ITSAN is on a mission to change that thinking. There is enough cited info out there to prove this iatrogenic drug-induced disease exists and may be more common than we know due to lack of research. Be safe everyone! Here is some cited info on it for you: http://www.dermnetnz.org/reactions/topical-steroid...
Joey (author) from Michigan on April 11, 2015:
Yes, a common side effect of too much steroids or applied on the face, so sorry. I too have a gel substance floating in my right cornea as of the past month and I can see it all the time. Eye doc said it will always be there but hope that it does not attach to the retina. The side effects from Topical Steroids are many and not brought up enough in my opinion.
Nell Rose from England on March 30, 2015:
I came back to say that the side effect of the cream has given me cataracts! Fact! I have always used becotide for asthma which is a small amount of steroids, and have never had any problems. then when I got eczema I used a hell of a lot of cream, now I have CATARACTS! And yes its definitely because of the cream!
Joey (author) from Michigan on March 25, 2014:
Glad you found it too Anne Kennedy! So many people have never known this including me and I'm blessed to be able to help others avoid this roid hell I went through. If you need support, the ITSAN forum is great! xx
AnneKennedy2951 on March 25, 2014:
I am so glad I found this page. I developed eczema this winter at age 48 after never having a single bout of it in my life, in fact my skin has always been oily but this crazy winter, eh. Anyway, the docs prescribed steroid cream and oral steroids but I was afraid to take the oral steroids and have just been using the cream. I have noticed after a month of use that instead of making it better as it initially did, the condition has stabilized so that the three or four annoying and ugly red patches on my hands are stubbornly staying put. I am going to throw away the steroid cream and search of homeopathic remedies. Jeesh, you just cant trust anything.
Joey (author) from Michigan on September 09, 2013:
Thanks for stopping by Gordon. Back before the advent of topical steroids around 1952, the usual protocol was sun at the beach and coal tar ointment. The majority of the kids cleared after that with cooler weather bringing on eczema flares again but all eventually grew out of it. I suspect that widespread prescribing of topical steroids for too long and stronger types, have exacerbated the condition so much that much of what we think is true eczema is "steroid induced" eczema. Mine always got better in the summer as I would swim in pools and lakes with ample sun exposure. The problem is that once your body is addicted, nothing short of time will cure the rebound effect of this drug, although sun in later stages may help some. BTW, every time you use ts in your lifetime, your blood vessels remember so all use is cumulative. I would never advise anyone using it for over two weeks on any one area of the body due to the rebound factor of today's potent steroids.
Gordon Hamilton from Wishaw, Lanarkshire, United Kingdom on September 09, 2013:
Apparently, as a baby, I was bothered with eczema but it cleared up pretty much until I was in my mid-twenties. Then it returned with a vengeance and with little or no warning. My arms and legs were the main affected areas. I remember ending up in hospital for about ten days with bandages soaked in who knows what wrapped around me.
I still have problems but my doctor strictly controls my access to steroid creams and the likes. I am instead given simple moisturising creams and told to get out in the sunshine for my dose of Vitamin D.
Do you know what helps me more than anything and always has? Sea water! We don't always have the weather for jumping overboard when I go fishing here in Scotland but a bath in water heavily laced with sea salt does me the world of good. I don't know if it's something you've ever tried but it certainly works for me.
I really hope your worst times are over - I know what it's like to some extent though have never experienced anything like what you have clearly suffered.
Best wishes :)
Joey (author) from Michigan on September 09, 2013:
Thank you for your comments Audrey and Nell. It was horrible and made me not want to live many times but now I am redeeming my suffering to help others so good comes out of any bad situation if you allow for that. It does sadden me to see all the babies and children going through it though and I pray that enough FDA complaints will warrant steroid warning labels on every strength of topical steroid.
Audrey Howitt from California on September 09, 2013:
I was so relieved to see your "after" pictures! But I am so sorry for the pure hell this must have been for you!
Nell Rose from England on September 09, 2013:
I am so sorry you went through this, but its such a detailed explanation that it will surely help others. I am so glad to see the 'after' photos, it must be such a relief, voted up and shared! nell
Joey (author) from Michigan on August 06, 2012:
I am a very healthy eater and do believe in letting the body heal itself, but this topical steroid addiction has caused pain on a level of 9-10 like shingles pain in my nerves for 9 months now and that cause no sleep and then insane nerve itching, so medicine is used until I can cope without it. This is torture and no one can imagine unless they have it this bad. I eat organic, free range meats, organic eggs, salads, Metagenics vitamins, spinal manipulations, liver cleanses etc.but it does not bring down the high levels of nitrix oxide and ease the deep nerve pain. Time is the cure for that. Thanks~
GetRidOfAcneSpots from North London on January 23, 2012:
Thanks so much for sharing your story with us, its upsetting, very frustrating and at the same time great to hear that you have ditched the profit hungry medical and pharmaceutical world and are have taken control to deal with your health in a natural and holistic way.
Unfortunately today, the pharmaceutical world is not overly concerened about creating treatments that cure people of their conditions, they are more interested in supressing the symptoms so that you continue to buy their harmful chemical based concoctions.
That's all medications do is to deal with the symptopms and not the cause of conditions.
Skin conditions are your bodies way of letting us know that something on the inside is wrong and out of balance. Usually its due to a poor functioning digestive system and toxin build up.
The only way to deal with this is through adopting a healthier diet.
There is so much more I could say about this subject, as it angers me to see people suffering at the hand of greedy pharmaceutical world and the modern medicine world, when it does not have to be that way.
When you consider that most if not all scientific studies are financed by BIG pharma, you just know that there is a conflict of interest and not one that is based on the interest or the health and curing the patient.
Lets face it, when medical people come forward in the medical and pharmaceutical world and state...
“The thing that bugs me is that people think that the Food & Drug Administration is protecting them – it isn’t.” Dr Herbert L. Former commisoner of the FDA
“Unfortunately, we have reached a time where, what is best for the patient, is no longer the issue.” Dr Ronald Druker author of The Code of Life
Do you not think its time to maybe look at ditching medications and take control of your own health and look for natural alternatives?
Joey (author) from Michigan on August 12, 2011:
Barbara, you can develop diabetes from topical steroids. Read the side effects on any medical website. The problem is that they say is it "rare" and that is not true. You can reverse things by stopping the steroids asap. Most symptoms will eventually go away, but I'm not going to sugarcoat it, this is hellish and hard at first. It sure beats glaucoma, diabetes, bones turning to dust, Cushings disease and a host of other ailments. Do check out my website and the support group link in my link section. You can get so much support from the red skin syndrome group as we are all going through withdrawals and we will heal in time!
50 Caliber from Arizona on August 12, 2011:
cortizone in any form, shots for joint pain etc. will raise havok with glucose readings, it won't cause diabetes but may give the appearance of it. talk with your doc. best bet.
Barbara Badder from USA on August 12, 2011:
I developed diabetes after using the cortisone cream for excema. I wonder now if that is why. I'll try the bathing in epsom salts.
50 Caliber from Arizona on August 11, 2011:
I find this interesting as around 15 years back after having skin problems all diagnosed as eczema, and shingles in certain areas that coincide with my neurological problems from diabetes, severe spinal chord damage. I been told that neurological problems often cause these problems and I passed on the creams and after reading this I'm glad. I used to get relief from it by going to the beach and staying in the salt water and sun seamed to be a great relief. I run my hot tub with 20 pounds of sea salt when I start clawing to blood. It requires that I dump the water and flush the system after a few days to keep from ruining the works with build up, I also only use it with the heater completely off. I imagine this is different to each of us as to relief. I voted up useful and interesting. On a last note Steroid use, creams or other causes havoc for a diabetic controlling their glucose levels that skyrocket out of control, thanks 50