My Topical Steroid Withdrawal ( Red Skin Syndrome) Story
If you need info or help with your steroid-induced condition, please check out ITSAN Red Skin Syndrome Support.
I was age three in this picture and as far back as my six older siblings remember, I had progressively worse 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 which some are now finding again to be helpful for eczema.
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 would choose a safer way to handle a child scratching and try to ease it with natural non-steroid ointments and tube wraps at night if they were helpful.
My Collection of Topical Steroids
All doctors are taught about the many side-effects of oral steroids, the must to monitor their use and to withdraw slowly from them. For whatever reason, topical steroids were considered non-systemic 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 to be monitored the same as oral steroids.
Here is the collection of topical steroids that I had been using for 40+ cumulative years on my inside knees and elbows, then just my fingers later in life. A couple of these were prescribed in the summer of 2010 for what my doc thought was scabies and fungal rash which I now know was steroid overdose symptoms at age 55. It just added insult to injury when I used heavy doses right before I discovered my dependence and rebound cycle from using topical steroids and stopped all of them. BTW, the inserts shown in the pic do tell the side-effects but they don't really tell the potential addiction one could get from these medications.
You might wonder how I knew enough to stop using it? Well at first it was very confusing to me as the usual dab of Triamcinalone on my fingers each day was not longer controlling the eczema on them and now it began to spread all over my body. So, as a last resort and following an online wheat grass website doctor, I finally gave into low doses of an oral steroid called Prednisone and followed this doctor's personal blog post instructions to use 20 mg of it and taper down to 5 mg until my skin "healed." Well, I did that for about five or six weeks and it cleared my skin until each time I got down to 5 mg, but my skin always flared up worse than before at that low dose. I finally realized that the oral steroids were just "feeding the addiction" and I stopped with that futile band-aid effort to heal my skin.
I did a search one night after that in desperation for "steroid cream side effects" and found a website called "Addicted Skin" by Kelly Palace. She had pics her skin and explained how she had gotten addicted to these creams and went through withdrawals after finding a dermatologist who diagnosed her with Steroid 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 currently has over 10,000 members from almost 30 countries. They eventually went different directions but she kept working hard with the non-profit friends to raise awareness of this unknown condition called RSS. Kelly realized after a few years that running a non-profit and her own full time job were too much for her. She elected a close comrade (JoAnne VanDyke) as the new ITSAN president who also has endured the withdrawal process. Kelly has given a huge part of her of her heart and soul to ITSAN which is now led by several comrades who were set free of steroid addiction through her online outreach.
ITSAN Interviews of Red Skin Syndrome Sufferers
Topical Steroid Withdrawal Story on Current Affair
Painful Red Bumps
This is a pic of the mysterious alien red bumps that appeared the summer of 2010 and had the doctors stumped. I then discovered at age 55 that my 50+ cumulative years of steroid cream on my hands had me hooked. This was actually the third time in my life that I had a rebound effect but the other two were on my face at ages 13 and 23. I used less often during the summer and the outbreaks were in early fall both times. This one was later August which again would explain it as I cut back on using the steroid cream in summer months.
The previous facial flares looked and felt like a hot lava volcano eruption and calmed down after a few weeks. At that time, I had no idea what a rebound was so it must have stopped after I used the cream on my hands again. I never used it on my face but a few times later in life but that does not matter, the skin is one organ and the steroid penetrates the blood vessels and can affect any and all parts of the body.
The red bumps came back several times throughout my journey along with various other alien attacks on my body that had my doctor scratching her head until she actually read the reports about RSS and spoke on the phone with an experience dermatologist who instructed her to help keep me comfortable as possible and what I might endure for a very long time. My doctor was a huge support and help to me during an awful time in my life.
The "Roid Hell" Before Pics
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 a 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 to 111 but is now back to 127 and I am 5' 7". I had various symptoms that freaked me out but thankfully my doctor was a big help in monitoring me along through it. A common symptom that come with RSS are large lymph node lumps as I had golf ball size ones in my groin that are now the size of large grapes. 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 the 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 skin and subcutaneous tissue, not elsewhere classified"...in my medical records and I wear a medical necklace that says "no steroids."
The 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 help sleep.
For the rest of my days here on earth, I will do whatever possible to bring awareness to this perhaps unknown more than rare medical and social travesty. I realize that many people may be able to use topical steroids and never get addicted but how to tell who will or won't? It would be nice to find out just what it is in some people that they do get addicted or have an allergy to this drug from using for just a short time or long time.
My hope is that the new biologic drugs will be a safer method of coping through the worst of it for some who just cannot handle withdrawal from topical steroids but long-term use studies have not weighed in on that. My prayer this will be a thing of the past in the not-too-distant future as doctors take more caution when prescribing topical steroids. This is truly preventable and my good friend, Briana is doing an excellent job to raise awareness of this fact with a soon-to-be released documentary of TSW/RSS. God bless. ~Joey
After 27 Months Healed Areas
My First Choice for Soothing Dry Skin
Natural Skin Creams
You are probably wondering what kind of cream I used instead of steroids and honestly no one method of comfort works for everyone. Some people absolutely dislike any ointment on their suffering skin and that is understandable, each person should do what feels best. I won't go into the whole eczema ideas of leaky gut, food intolerances, irritants and family genetics with it as everyone seems to have a theory about it. There are people getting addicted to topical steroids for using them to lighten their skin so this is not just about eczema.
I do think my eczema could be hereditary as my dad and brother had bouts with it but never severe and my brother grew out of it. Some dermatologists from the older generation of dermatology say they rarely saw adult eczema back in their early medical days. There is speculation that most adult eczema today is steroid induced and I pray daily that better methods to treat it are found.
Here is one natural lotion that I used later into my withdrawal for my recovering skin and liked it a lot. I also used Spectrum Palm Oil for a barrier ointment throughout my later month withdrawals as it is very mild and soothing. Most gentle products with a few ingredients are my choice but I really don't need anything daily anymore for moisture on my skin as it is producing it's own pretty good for the first time in my life! :)
A word of caution: Topical steroid withdrawals wreak havoc with skin for a long time and can cause a lot of irritation to things that normally would not bother it. A good way to find out what you prefer might be using something safe on one small area of an arm or leg and not using on the other one to make an evaluation. The other thing is your skin might change over time and like or not like something so you kind of figure it out as you go along in this journey. Spot test on a small area with anything new.