I am writing today as a mother, advocate, and someone who has experienced the devastating impacts of topical steroid addiction (TSA) and withdrawal (TSW) in the most personal and painful way possible. My son, at just three years old, went through the unimaginable. What started as a treatment for eczema—a condition we believed could be managed with topical steroids prescribed by our doctor—quickly turned into a nightmare we never expected. We were not warned of the risks of dependency. We were not guided on how to manage his usage safely or given any indication of how profoundly these medications could affect him.
Within a short period, my son became dependent on these steroids. As time passed, his skin would only respond to higher doses and more frequent applications. When we tried to stop, thinking it would help him recover, his body reacted in ways that I still find hard to describe without tearing up. His skin became red, raw, unbearably itchy, and fragile. He would cry in pain, waking up at night because his skin was burning. This wasn’t just physical suffering; this was a complete upheaval of his sense of peace, his sleep, his daily life, and ultimately, our family’s wellbeing.
I share this not to invoke pity but to highlight a pressing issue that has been ignored for too long. Countless families are dealing with similar stories of TSW and TSA, often without support, resources, or even basic recognition of their pain. The lack of awareness and guidance around the use of topical steroids is a serious public health issue that must be addressed. Doctors prescribe these medications without fully explaining the risks, without a clear plan for tapering off, and without any structured follow-up to monitor for signs of dependency or withdrawal. For many, the very treatment meant to bring relief becomes an unintentional cause of suffering.
I urge the government and regulatory bodies to implement stricter regulations on the use of topical steroids, especially for vulnerable groups like children. At a minimum, this should include:
1. Mandatory Testing and Research on Long-Term Effects: Topical steroids need to be rigorously tested, not just for efficacy but for long-term impact, particularly for those who may use them frequently or for extended periods.
2. Clear Guidelines for Doctors: Healthcare providers must have structured guidelines for prescribing these medications, including maximum durations, tapering plans, and signs of potential dependency.
3. Comprehensive Education for Patients and Families: Families deserve transparency and education on the risks of dependency and withdrawal. They should be informed of all potential side effects and the need for gradual reduction, as well as possible alternatives to topical steroids.
4. Regular Monitoring and Safety Checks: Any patient, particularly children, using topical steroids should have regular check-ins to monitor for signs of dependency or adverse reactions, with clear pathways for seeking help if they arise.
Our story is just one among many, but the numbers are growing. The current approach to topical steroids is insufficient and leaves families vulnerable. Children should not be subjected to withdrawal symptoms for a medication intended to help them, and no parent should feel powerless or uninformed in caring for their child’s health.
Please consider the real and painful consequences that a lack of awareness, research, and safety management can bring. We need a healthcare system that values safety and transparency, protecting those most vulnerable to these devastating side effects. Thank you for taking the time to read this, and for considering the very real impact that better testing, guidelines, and education could have on families like mine and so many others.
With deepest sincerity,
Veronica Gonzalez