If you’ve been prescribed steroids to manage vasculitis, you’re likely aware of their benefits - but also their potential downsides. While steroids are essential in controlling inflammation and preventing disease flares, long-term use can lead to unwanted side effects, collectively known as steroid-toxicity.
The Vasculitis Foundation (VF) is an international non-profit dedicated to supporting patients with vasculitis and is actively working to ensure that people using steroids have the resources they need to navigate treatment safely.
A key part of this effort is VF’s collaboration in Sam - Steroids and Me - and helping to ensure the experience and content are right for patients.
Why patient involvement matters
Joyce Kullman, Executive Director of the Vasculitis Foundation, emphasizes that patients must be included in the development of new therapies and practical tools like Sam. By listening to the real experiences of people using steroids, the app was designed to serve patients - it’s easy to use and provides practical support that people actually need.
VF members played a direct role in shaping Sam with user testing and helping to refine the content and features to ensure they are as helpful as possible.
A growing impact
VF’s partnership has already demonstrated strong patient engagement. At the American College of Rheumatology (ACR) conference in 2024. Data were presented showing that vasculitis patients using Sam are highly engaged, spending an average of five minutes per session exploring the platform’s features. Around 18% of users registered to actively track their steroid side effects - a clear sign that patients value tools that empower them to manage their health.
VF continues to strengthen its commitment to helping patients by promoting Sam as a trusted resource on steroid safety. The app is featured on their website’s prednisone information page, directing users to the easy-to-access companion that can help them navigate their treatment with confidence.
Steroids will likely remain a cornerstone of vasculitis treatment for the foreseeable future. But thanks to VF’s advocacy and support for Sam, patients now have tools to stay informed, track side effects, and improve their treatment journey.