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
Tuesday, March 3, 2015
Tuesday, February 3, 2015
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!
Tuesday, January 20, 2015
University of California to Conduct Study of Patients On and Then Off Topical Steroids
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| 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
Wednesday, November 19, 2014
ITSAN Shirt to Help You Share an Important Message
Due to many requests, ITSAN now has a shirt with a very important message! I for one am really glad to have one on order as I run into people everywhere I go that want to know more about my Topical Steroid Withdrawal story and this shirt will open more doors to dialogue about the dangers of this drug.
There is a question of how rare Topical Steroid Addiction is and even statements made that addiction to this drug is indeed rare but the truth is, no clinical studies have been done to confirm this assumption.
I spoke with my allergist last week and asked him to consider if he took 100 of his 1000's of patients off all forms of topical steroids for 6 or 8 weeks, what would he see? It truly challenged him and his answer was that there are many types of steroids to help patients. He finally admitted that he has a couple of patients that are not responding to any treatments of steroids, Protopic and light booth so they may in fact have this "Red Skin Syndrome" and he promised to read all the literature I brought him and look into it more. That, my friends is how we begin to change this travesty, whether it's rare or not (which I doubt) it needs to stop as the suffering I see in the ITSAN support groups is enough to make anyone with a heart, cry daily forever!
If you share the passion of saving someone's skin, please buy a shirt and wear it to share, thanks!
There is a question of how rare Topical Steroid Addiction is and even statements made that addiction to this drug is indeed rare but the truth is, no clinical studies have been done to confirm this assumption.
I spoke with my allergist last week and asked him to consider if he took 100 of his 1000's of patients off all forms of topical steroids for 6 or 8 weeks, what would he see? It truly challenged him and his answer was that there are many types of steroids to help patients. He finally admitted that he has a couple of patients that are not responding to any treatments of steroids, Protopic and light booth so they may in fact have this "Red Skin Syndrome" and he promised to read all the literature I brought him and look into it more. That, my friends is how we begin to change this travesty, whether it's rare or not (which I doubt) it needs to stop as the suffering I see in the ITSAN support groups is enough to make anyone with a heart, cry daily forever!
If you share the passion of saving someone's skin, please buy a shirt and wear it to share, thanks!
Monday, March 24, 2014
Topical Steroids and Your Eyes
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.
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.
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.
Sunday, November 10, 2013
Welcome to the journeys of many steroid addicted people who have found the answer to this dependence, cessation from all topical steroids. I've started this blog to share my own condensed story of this hellish ride as well as others I've seen endure it and some who are on the other side of the roid matrix.
My website is called Red Skin Syndrome and was the first one of many to publicize the woes of so many crazy symptoms of this withdrawal from a potent drug that none of us knew would mess up our bodies like it has. Stay tuned for many more and check out my website which has the first member's pics of a support group now called ITSAN forums. ITSAN is the abbreviation for International Topical Steroid Addiction Network which was started by one lady who went through the topical steroid withdrawal herself, Kelly Palace. Thanks to her internet efforts to share her own rough withdrawal from steroids, over a thousand sufferers have found the answer to their steroid induced eczema or other skin issues from overuse of these creams. I hope you find some answers here and check out the side-bar of other blogs and links about tsa/tsw. Thanks for visiting! :)
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| My steroid cream "fix" |
.jpg "Red hot skin after stopping topical steroids") |
| Red hot skin after stopping topical steroids |
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