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!

 

My Topical Steroid Withdrawal Syndrome Story

I wrote about my own topical steroid withdrawal syndrome (TSWS) journey about 8 years ago. I will never forget the trauma and intensity of that 27 month, dark night in my life. I am committed to telling my story everywhere I go and to help raise awareness of TSWS and to help prevent this preventable travesty in other people's lives. Hubpages recently promoted my article to the "Patient's Lounge" which will raise views and reach more people! Yay! Read my story and see my pics here.

ITSAN 2014

HUGE Shoutout to Preventable Author, Briana Banos!

Give credit where credit is due! 

BIG APPLAUSE!

Briana is an incredible lady and part of the TSW/RSS support community. While suffering Topical Steroid Withdrawal herself, she went above and beyond to raise much needed awareness to this PREVENTABLE condition. Briana found her way to the mother support ship, ITSAN, who gave her much-needed support during her own, difficult withdrawal from steroids. So, it goes to show how one person can move mountains after deciding to do something about it. She is redeeming her suffering and making a difference in the world.

I will forever remember you and your diligence to save the red skin sufferers, as well as the impact you've made to help see that one one ever has to go through this again, because it is indeed, Preventable! Please do watch this incredible video made by Briana, as she traveled the world to gather the critical info for it.

The medical community has taken notice of her mission and it has been published on National Eczema Association website. Good job my friend! Thank you NEA for giving this huge travesty of a disease, public recognition on your site. I hope you'll continue to make it known worldwide. Steroids need to be used very cautiously!

Where Are The TSW Vets Today?

Hi all,

I know those of you that follow the RSW bloggers probably wonder what happened to the ones that are no longer updating their blogs very often, maybe not since a couple of years ago. The first group of vets came together in 2010 in a Google support group to support each other, which eventually led to the cumulative thousands in the ITSAN forum and Facebook group, plus other specialty groups.

I can't speak for a large portion of the early support group members but I can tell you that some of the core vets that helped out or were on the board of ITSAN, are living their lives again and want the best for everyone else coming down that road less traveled.

We recently had a "catch-up" reunion call with these comrades, (even though I was in the hospital for a case of pancreatitis, and had to pass on the reunion call) the vets came together on the call and really enjoyed catching up with each other. Everyone lives in different states, so it's quite a job to coordinate getting everyone on a call with three different time zones!

The new ITSAN president, Kelly Barta, took my place facilitating the call and did a great job, which I never doubted. Kelly recently traveled to my neck of the country and we had an enjoyable and talkative lunch together. We even got the server to take some pics of us. :) I just love this lady, she is a torch runner with a heart of gold, picking up for the former hard-working comrades of this cause. She travels often to represent the suffering TSW community to bring more change to the whole outlook and knowledge of this drug-induced, iatrogenic disease.

So the first generation vets of TSW had a wonderful time catching up, sharing their stories and how life is now for them. There is life after TSW but it would have been hard to convince any of us of that when we were in full throngs of steroid-withdrawal hell. As I've said many times in our support groups, "this too shall pass." You will have some or many scars and you may have bumps down road, and most likely will not be the same person coming out of it as going in. That can be a good thing as that is what suffering does and if we can take the good, improve our outlook on the precious gift of life, and let the bad stay in the past, this is how to overcome. We help others because no one else understands this beast like we do. It's truly not what happens to you in life, but how you respond to it.

BTW, calling all vets with blogs, to please update so the desperadoes that look to us for hope and encouragement on this hard road, gain some stamina to endure. We all know that feeling and need to be a light, spurring them on in the darkness of that TSW tunnel. There is a new tomorrow waiting for you!

Thank you Dr. Sheary for Joining the Battle to Expose Steroid Induced RSS

Dr. Belinda Sheary has been working hard in her medical skills to expose the largely unknown iatrogenic disease steroid induced Red Skin Syndrome or Topical Steroid Withdrawal.

This study is the recent results of her study of several patients. I want to publicly thank her and for the many emails we've shared to work together on this preventable disease!

https://www.racgp.org.au/afp/2016/june/topical-corticosteroid-addiction-and-withdrawal-%E2%80%93-an-overview-for-gps/

Australian Dr. Sheary Publishes New Red Skin Syndrome Study

 
Australian doctor speaking out about topical steroid-induced dermatitis! Here is another doctor who has seen topical steroid withdrawal firsthand and decided to join the awareness cause! Yay for Dr. Sheary! Please do add to your cited info files and share with everyone who needs it. Let your voices be heard in an intelligent way so the medical community understands there truly is a problem and not the silly notion of "steroid phobia." 

Australian Study of Red Skin Syndrome

Indian Dermatologists Rejoice as India Bans Several Steroid Combination Drugs

I congratulate the Indian doctors for their diligent work in raising awareness of topical steroid adverse effects as well and the combination of steroids and antibiotics or antifungals. Good for you! May our future children never have to suffer with these conditions!

Several dermatologists from India have been crusading to make their citizens and medical community aware of the serious side-effects of topical steroids being overused or without a prescription.There is now more and more evidence arising from within the medical community that topical steroid indeed have serious side-effects and when combined with other medication, become even more risky to use.

ITSAN has been in communication with some of these doctors and have gotten a thumbs up of support as well in return for our concerted efforts to raise awareness of the potential risks of using topical steroids without the direction of a supportive doctors who believes and understands the side-effects of this drug.

Dr. Koushik Lahiri, a prominent Indian Dermatologist, was appointed two years ago by Dr. Deepak Parikh, the President of Indian Association of Dermatologists, Venereologists and Leprologists(IADVL) as the Chairperson of a task-force to deal with the menace of topical steroid misuse and abuse. His concerted efforts along with other doctors has proven to be very effective in the effort to protect their citizens from "Topical Steroid-Dependent Face TSDF." A condition that has been escalating in India citizens. http://www.idoj.in/article.asp?issn=2229-5178;year=2014;volume=5;issue=4;spage=416;epage=425;aulast=Coondoo

 "Misuse of TS on the face is seen all over India and its incidence appears to be increasing rapidly. TSDF has also been described under various names like steroid addiction, dermatitis rosaceaformis steroidica and red face syndrome. In this condition after long term application of TS on the face, there is severe rebound erythema, burning and scaling on the face on attempting to stop the application of TS.[2]"

From now on these following steroid combinations are BANNED WITH IMMEDIATE EFFECT by the Indian government.

"1. Clobetasol + Ofloxacin + Miconazole + Zinc Sulphate 2. Clobetasole + Gentamicin + Miconazole + Zinc Sulphate 3. Clobetasol + Ofloxacin + Ketoconazol + Zinc Sulphate 4. Clobetasol + Gentamicin + Tolnaftate + lodochlorhydroxyquinone + Ketoconazole 5. Clobetasol + Neomycin + Miconazole + Clotrimazole 6. Clobetasol Propionate + Ofloxacin + Ornidazole + Terbinafine 7. Clobetasol + Neomycin + Miconazole + Zinc Sulphate 8. Betamethasone + Fusidic Acid + Gentamycin + Tolnaftate + lodochlorhydroxyquinoline 9. Betamethasone + Gentamicin + Tolnaftate + lodochlorhydroxyquinoline 10. Betamethasone + Neomycin + Tolnaftate + lodochlorohydroxyquinoline + Cholorocresol 11. Betamethasone + Gentamycin + Zinc Sulphate + Clotrimoazole + Chlorocresol 12. Ciprofloxacin + Fluocinolone + Clotrimazole + Neomycin + Chlorocresol 13. Beclomethasone + Clotimazole + Neomycin + lodochlorohydroxyquinone 14. Beclomethasone + Clotrimazole + Gentamicin + lodochlorhydroxyquinoline 15. Beclomethasone Diproprionate + Neomycin + Tolnaftate + lodochlorhydroxyquinoline +Chlorocresol" http://timesofindia.indiatimes.com/india/Govt-bans-350-drugs-including-Phensedyl-Corex/articleshow/51366873.cms

"Doctors and health experts say the spread and misuse of antibiotic combinations may be contributing to antibiotic resistance in India. Some super-bugs, which are strains of bacteria that have become resistant to antibiotics, have been found in patients who traveled from India to countries including the United States and Britain." http://news.yahoo.com/antibiotic-combination-marketed-abbott-india-list-banned-drugs-061739305--finance.html

Feel Like Chillin that Hot, Itchy Skin?

Red Skin Syndrome has the name 'red' in it for a reason, you burn at some point and the degrees of it vary but it is hot! I was always using about 10 ice packs to keep my burning, hot skin cooled when enduring topical steroid withdrawal in the early months. Then I needed ice for the insane itch as well. My sleep was the worst as I would lay there and just burn like I had been in the sun all day and unlike a sunburn that clears in a few days, this lasted about 4 months. The itch lasted much longer and when I needed quick relief, I reached for my trusty ice pack and placed it right on the area itching the worst. If I drove my car anywhere in the summer, I had to lay ice packs on my lap as my AC was broken and it was awful to go somewhere and suddenly get an itch attack while driving!

One time I went to my grandson's birthday party which was in the summer on a hot 90 degree, humid day.  I am a very dedicated "Nana" and would not miss my grandchild's party unless I was on death watch so I went which was about a 20 minute drive. About halfway there my whole body got too hot even with all the windows down and I began to itch violently all over my body like ants were crawling on me and biting! I pushed the gas pedal down and hit almost 90 on the highway without realizing it while scratching one -handed to get some relief as you cannot not touch your skin when it feels literally like ants biting or needles poking you everywhere!

So now here comes a police car speeding up on me while I'm doing my best to look sane and drive! He walks up and I'm literally having an itch fit which probably looked like an epileptic fit. ARGH...Now I have the greatest respect for our law enforcement officers but he was young and cocky, not the least bit understanding. While trying to respectfully scratch like a lady, I'm sweating and getting worse while trying to explain to him that I am in topical steroid withdrawal in speed sentences which probably did not sound too good with the word "withdrawal" in the 20 second explanation. Then I quickly add in my "speedonic" language, how the heat is making me worse and sitting there talking to him is not helping!

While staring coldly at me scratching non-stop, he says I need to get my air fixed after I just told him it was too expensive, but he acted like money was not a big deal for this repair. He then asked for my id and car info and went back to his patrol car while I fought the urge to scream and ask for an escort to my destination. I could tell he was watching me writhe around like a crazy person while scratching and sweating. It was hell to say the least and anyone reading this who is in the process of or has endured TSW knows exactly what I'm describing here!




He comes back and says "get that air fixed" and lets me go without a ticket. Yay for pity on the insane itchers! I didn't care at that point, just needed to get going so I could run into my daughter's air conditioned house and hide in her bathroom for a bit. My poor grandson got a "hi honey, happy birthday" while I ran into their bathroom for a reprieve from my itch hell. I did not stay long and learned after that to do Facetime with my grandchildren more as RSS disrupts your life in so many ways.



Needless to say, if I had seen this handy ice vest, I would have bought one and wore it all the time except for my bath times! This could be useful even after Red Skin Syndrome like a hot ball game day, working in the garden or sitting at a parade! I am sharing and hope someone will benefit from it. Keep cool! :)

Click on pic for more info

ITSAN Got a New Spring Makeover!

ITSAN just sprung into spring with a remodeled, brand new look and more helpful info about Red Skin Syndrome!

If you want to show your doctors what withdrawal from topical steroids looks like, this is the site to show them as the new gallery has a great new look and dates of the TSW on the pics when you scroll over them. Something needed for a long time.

Each page offers organized, informative information without being diagnostic or medically advising and there are quotes from different doctors that were gladly offered to ITSAN as support for RSS sufferers.

A big thanks to the site project manager as he is highly skilled and appreciated!

You can read and see a whole lot more in the ITSAN spring newsletter here! ITSAN 2015 Spring Newsletter

Safer Non-Steroid Treatment for Nail Psoriasis

National Psoriasis Foundation is well aware of the effective topical steroid drug but also acknowledges the damages it may cause. The vitamin D based ointment is being researched more but showed higher percentages of effectiveness than steroids. As National Eczema Association just published their quest for safer eczema treatments, so does the NPF. I hope that this will increase the awareness of Red Skin Syndrome as well and new methods of treatment for many skin ailments will be offered first rather than topical steroids.

Safer Nail Psoriasis Treatment

Miss Kitty Rides Again!

I love this Miss Kitty lady who is well known in the ITSAN circuit because of her brilliant ability to communicate well,  relate to and support hurting RSS warriors, study, research,  write, do graphs and comparisons, post funny pics on her blog and just downright entertain us!

I'm geeked that she along with another RSS warrior are helping to build bridges with the medical community on this mysterious condition called Topical Steroid Withdrawal or Red Skin Syndrome. We are just over 3 years old as a nonprofit with a mission to raise lots more awareness and build solid bridges of communication and dialogue with the other skin disease organizations. 

I commend Jo and Wendy for their time well spent at the Centre for Evidence Based Dermatology (CEBD) as guest panel patients. Good job and teamwork ladies, keep it going!

Check out her great blog post here!   http://misskittydefeatseczema.blogspot.com/2015/03/we-attended-eczema-patient-panel-event.html

Steroid Addiction Dangers Aired on Current Affair TV Show Thanks to our Crusader Comrades

The word is out and snowballing, thanks to our friends who advocate to change this travesty of Topical Steroid Addiction and Withdrawal. Current Affair of Australia gave it a fair report and allowed the truth to be told on the dangers and potential of the overly prescribed skin medication. Thank you and a big high five to Jake and Emily for going viral to help thousands of others know the risks of using topical steroids for eczema and other skin conditions!

University of California to Conduct Study of Patients On and Then Off Topical Steroids

University of California 

University of California, San Francisco is now enrolling people in this on and off TCS study which is a good but the problem is that it will not be a long enough time frame to see accurate results of a topical steroid withdrawal. We are encouraging everyone to contact them and request the study be done longer, like a year or so in order to get best readings or at least consider doing a study specifically on individuals who have used Topical Steroids for at least a year and follow their withdrawals for a longer time span. There are over 4000 suffering members between the ITSAN and Facebook groups, so we can supply the people!

If they don't listen to us at this point, at least our voices will be heard and who knows, this may be happening because our voices have been heard? An important thing to remember when we dialogue with the medical community is to sound rational and knowledgeable and not accusing and emotional. We will push for more research on this, no doubt!

"Detailed Description:

This exploratory study consists of four visits to the investigator site post screening: at Weeks 0 (baseline), 2, 6 and 8 (Figure 1). At the first visit (baseline), patients who have met the screening eligibility criteria will be started on a stable TCS regimen for a total of two weeks. At the second visit (Week 6) following two weeks of therapy on stable TCS, patients will stop TCS and blood, serum, plasma and two 6mm punch biopsies (one lesional (L) and one non-lesional (NL) skin) will be obtained. At the third visit (Week 6), after four weeks receiving no TCS, the same sample collections will be repeated and the patients will then enter a two week safety follow up. At the end of the safety follow up (last visit, Week 8) and after obtaining written informed consent by the patient, blood, serum and plasma samples may be collected."

https://clinicaltrials.gov/ct2/show/NCT02317276?term=atopic+dermatitis&recr=Open&state1=NA%3AUS%3ACA&rank=13