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