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