Steroid medicines, especially oral glucocorticoids like prednisone, have long been the go-to rescue for sudden flare-ups of asthma, COPD, eczema, sarcoidosis, and many other inflammatory conditions. Yet more and more people now pause before taking that first tablet. Why? Because the same drug that quiets a raging immune system can also bring a host of unwelcome effects if used too often or for too long.
Why the change in prescribing?
Stephanie Williams, BS, RRT, Project Lead, Speak Up for COPD at GAAPP, explains,
“For so long, steroids were one of the main tools clinicians would reach for. With the shift in the last several years to be more careful about oral steroids, patients and caregivers have a lot of questions about appropriate use, side effects, and long-term impact.”
The medical community has learned that repeated “bursts,” or long courses of steroids, raise the risk of mood changes, weight gain, sleep problems, bone thinning, high blood sugar, and more. Because of this, guidelines now emphasize using the lowest dose for the shortest possible time and exploring non-steroid options.
The “double-edged sword” feeling
Dr Karen Rance, Chief Medical Officer at GAAPP, often hears patients describe steroids as a double-edged sword that delivers fast relief during a flare, but with side effects that can be very concerning/damaging.
Caregivers are equally torn. They want to see their loved ones breathe more easily or move without pain, but fear behavioral swings or future health problems. Clear guidance on when steroids are truly needed can ease much of this anxiety.
The “Devil’s Tic Tac”
Within the sarcoidosis community, Tricha Shivas, Chief of Staff and Strategy, Foundation For Sarcoidosis Research, hears members wrestle with conflicting fears:
- Fear of staying on steroids and facing lasting side effects.
- Fear of stopping steroids and having their disease spiral out of control.
That tension is real. People who have tapered off steroids dread the idea of restarting, while others who cannot taper wonder if they will ever feel like themselves again. This is where balanced, individualized plans come in.
Caroline Donovan, Director of Patient Engagement for Lupus Therapeutics and Lupus Research Alliance, highlights a theme we hear across many chronic illnesses: care, support, and education are uneven. Some individuals receive step-by-step tapering instructions and feel fully supported.
“Sadly, many community members have shared that they only became aware of the full extent of steroid-related health risks after experiencing side effects from long-term use.”
Everyone benefits when providers proactively discuss:
- What the steroid is treating and why alternatives may or may not work.
- Early warning signs of side effects and how to lessen them.
- A written tapering schedule, with room for questions at each step.
How Sam can help
Sam was designed to bridge these information gaps. Think of Sam as a friendly teammate who can:
- Explain why a clinician may choose to prescribe steroids and what they are.
- Outline common side effects in plain language and offer tips to lower risk and smooth your journey.
- Guide conversations with your clinical team so you leave every visit knowing the purpose of each medicine, when to call for help, and what your next step will be.
Steroids remain powerful tools, but they need to be used thoughtfully, with clear plans and open communication. Let Sam walk beside you, answering questions and empowering you to partner more effectively with your healthcare team.