What is TSW Syndrome?
Topical Steroid Withdrawal Syndrome, also known as Topical Steroid Addiction and Red Skin Syndrome, is a debilitating condition that can arise from the use of topical steroid creams to treat a skin problem such as eczema.
At the International Topical Steroid Awareness Network we believe you have the right to an accurate diagnosis, informed consent, diverse treatment options, and support from the medical community. Whether you are dealing with eczema or other skin conditions, learning about the risks, benefits, and alternatives to topical steroids can help with prevention and early detection of Topical Steroid Withdrawal (TSW) Syndrome.
At the International Topical Steroid Awareness Network we believe you have the right to an accurate diagnosis, informed consent, diverse treatment options, and support from the medical community. Whether you are dealing with eczema or other skin conditions, learning about the risks, benefits, and alternatives to topical steroids can help with prevention and early detection of Topical Steroid Withdrawal (TSW) Syndrome.
TSW Warrior success stories
TSW Syndrome affects potentially millions of people around the world, of every age and background. View photos and stories from some of our brave TSW veterans.
For Doctors
Whether you have been treated with topical steroids for eczema, psoriasis, or another skin condition, TSW Syndrome may be difficult to diagnose. Discuss these answers to common questions from peer-reviewed medical literature with your doctor.
Video: Overview of TSW
Dr. Heba Khaled (BDS BSc (Hons)) authored this atlas from a medical and patient perspective explaining how TSW develops, presents, and resolves. Dr. Khaled is a dentist from a medical family, but her understanding of TSW is personal – she is an ITSAN member who began her own withdrawal in 2017.
What to Expect
Here’s what to expect if you make the decision to withdraw from topical steroids.
Dealing with the Itch
The urge to scratch can be powerful when going through Topical Steroid Withdrawal. What can be done about the intense itching?
Survival Guide
Recommendations, tips and tricks from TSW veterans to help you through Topical Steroid Withdrawal.
ITSAN is here to help. You are not alone.
Topical Steroid Withdrawal Syndrome can be overwhelming and isolating. Find community and encouragement by joining our ITSAN support group.
Your fellow ITSAN members share tips and comfort measures so you don’t have to go it alone.
We have resources for TSW patients, parent caregivers and caregiver partners, including support for your mental and physical health needs.
“This organization helped me through the most challenging, darkest hours of my life. I don’t know how I would have made it through the healing process without the support of the founders and members, as well as the resources this network provides.” – Lorry, USA
“ITSAN is an encyclopedia of information on TSW and treatment options for eczema. My granddaughter was diagnosed with eczema when she was 3 days old and was prescribed topical steroids. It worked well in the beginning but after being prescribed steroids for over 3 years we were seeing many side effects from compromised immunity to stunted growth, anxiety issues to many more. Me and my family are thankful that ITSAN helped us with timely information and support to help my granddaughter’s TSW get better. She is now a healthy child living life with full enthusiasm” – Revathi Krishnan, Mumbai – India
“I felt alone battling my condition without the right support and information. If not for ITSAN I could not have survived my severe eczema which later turned into TSW. ITSAN’s support group provided valuable information in understanding my treatment options, connecting with survivors of TSW and helped me through the painful process of TSW.” – Vini Periera , Australia
Preventable: Protecting our Body’s Largest Organ
Documentary by ITSAN member Briana Banos explaining the causes of TSW Syndrome, exploring treatment options, and exposing the lived experience of the TSW Syndrome sufferer.
Delivering Lasting Impact
The International Topical Steroid Awareness Network (ITSAN), was formed in 2012 to raise awareness about Topical Steroid Withdrawal Syndrome, also known as Topical Steroid Addiction or Red Skin Syndrome. ITSAN is a diverse community of individuals, medical professionals, and caregivers united by our commitment to prevent TSW Syndrome and to alleviate the suffering of anyone facing this painful experience.
Raising Awareness
We raise awareness by amplifying the TSW experience through:
– Social media: Facebook, Instagram, Twitter, and YouTube
– Representing ITSAN at National and International Conferences
– Collaboration with medical organizations and regulating bodies
Extending Support
Find strength and encouragement in our support group. There is more than one way to deal with TSW, and there is room for everyone at the table. The support group is also moderated by ITSAN board members to provide a safe space for everyone.
Providing Information
We provide information for affected individuals and health care providers:
– ITSAN.org – The TSW information hub
– Webinar Series
– Newsletters: Subscribe here
– News, tips and the latest research
Research & Advocacy
– Joined forces with AAN for Steroid Stewardship campaign
– Conducting surveys on TSW prevalence, steroid use, and side effects of cumulative steroid use
– Collaboration with the American Academy of Dermatology, CSD, IADPO, FDA, DCAN to bring regulatory and policy changes
Collaborating with other organizations:
“More than Skin Deep” Voice of the Patient Report
The International Topical Steroid Awareness Network, along with four other nonprofits, is excited to launch the “More than Skin Deep” Voice of the Patient report! This report includes the lived experience of eczema, drawn from data and testimony shared at the 1st patient-focused drug development (PFDD) meeting for eczema. Check out this report and learn from hundreds patient and caregiver experts who shared their perspectives at the meeting, on the webcast, and via the survey. Host organizations, including our own Kelly Barta and Kathryn Tullos, and sponsor companies share how they’ll use the learnings from the More Than Skin Deep initiative to better meet the community’s needs. Download the report here.
Physician Statements
“I have certainly seen Topical Steroid Withdrawal Syndrome, now multiple times. Generally, I find that these patients tend to have more widespread involvement on their body, but almost always have face and neck involved. Unlike eczema, it tends to be more red and flushing or blushing in appearance, although many patients will also have eczematous and scaly lesions at the same time.”
“TSW is real. It occurs most commonly in the setting of long-term and daily medium to high potency steroid use, especially on the face. While topical steroids can be effective in improving inflammation in the skin of patients with eczema, research has confirmed the need for avoiding daily long-term use of topical steroids. For patients needing longer-term management, incorporating non-steroidal therapies and using topical steroids only intermittently (such as twice per week), will likely prevent most cases of TSW. We as dermatologists need to do a better job educating patients about how to use TCS safely long-term and we as dermatologists need to be better at recognizing this adverse effect in our patients.”
“Though the topic of topical steroid addiction (TSA) is troublesome for physicians, we should not postpone facing it. It is not a temporary tide, TSA is real. Please search articles in PubMed. At the minimum, warning of TSA as a side-effect of topical steroids must be added in the guidelines of all areas of atopic dermatitis treatment.”
“By being aware of TCS addiction and withdrawal, practitioners may be better able to help prevent this adverse effect and offer supportive care to patients in TCS withdrawal. It would also be useful for GPs to be able to discuss TCS addiction and withdrawal with patients who seek to clarify information they glean from non-medical sources.”
Explore ways you can help today.
Your Support Matters
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85% of our total operating expenses fund: raising awareness, providing information, extending support, and partnering with governing and medical entities for advocacy and research to bring regulatory changes.
Help support ITSAN
Make a tax-deductible donation to ITSAN and help support our ongoing efforts to raise awareness about TSW Syndrome.
