Every morning, millions of people living with chronic inflammatory or autoimmune conditions shake a small bottle, tip out a number of prednisone tablets, and hope to keep pain, breathlessness, or fatigue at bay. These little corticosteroid pills can quiet inflammation quickly and keep symptoms under control, yet many wonder what the tablets are quietly stealing from them in return.
“Patient advocacy groups like FSR have been encouraging patients to move away from long‑term or high‑dose steroid use and into less problematic secondary therapies whenever medically appropriate. Despite these efforts, patients continue to be prescribed steroids without considering long‑term consequences.”
— Tricha Shivas, Chief of Staff and Strategy, Foundation for Sarcoidosis Research
Counting the cost
For many, steroids mean the difference between breathing freely, walking without pain, or simply getting through the day. Over time, however, the same medicine can hollow out bones, raise blood sugar, blur vision, or add unwanted weight.
“Steroids seem to bring out strong opinions from everyone – patients, caregivers, and clinicians alike. Patients are quick to say how much they rely on steroids, especially when they’re struggling to breathe or dealing with exacerbations, but they often follow up with, ‘I hate what these steroids do to me.’ They know steroids help, but the physical side effects and long‑term consequences weigh heavily on them.”
— Stephanie Williams, BS, RRT, Project Lead, Speak Up for COPD, GAAPP
The conflict patients describe is echoed at the kitchen table, where loved ones watch the trade‑offs unfold day after day.
“Caregivers see both sides, too. They’re grateful for the relief steroids can bring, but they also feel helpless watching their loved ones navigate side effects or wonder if the treatment might cause more harm down the road. It’s a difficult position to be in, supporting someone you care about while wishing things could be easier for them.”
— Stephanie Williams, BS, RRT Project Lead, Speak Up for COPD, GAAPP
Inside the clinic, that same unease travels up the stethoscope. Providers know the chemistry as well as anyone, and they feel the pinch of limited options.
“Clinicians feel stuck. Steroids are effective, no doubt about it, but they’re also well aware of the risks. While they’d love to avoid overusing them, they know that in certain situations they’re simply the best option available.” — Stephanie Williams, BS, GAAPP
Support organizations witness the cumulative toll through helpline calls and focus groups, each story adding more detail to the larger picture of life on steroids.
“Our community members are most concerned with the long‑term health risks and side effects associated with steroids. Several have spoken about their experiences with weakening bones, fragile skin, muscle deterioration, weight gain, and cataracts.”
— Caroline Donovan, Director of Patient Engagement, Lupus Therapeutics and Lupus Research Alliance
Finding a safer path forward
Many alternatives to steroids exist, yet reaching them can feel like crossing a maze.
“Sometimes, alternative therapies aren’t discussed with patients, or maybe patients aren’t sure where to look. Insurance doesn’t always cover them, and even when it does, figuring out how to use that coverage can be confusing. A lot of people feel overwhelmed just trying to get started.”
— Stephanie Williams, BS, GAAPP
Advocacy groups are stepping in to shorten that maze. By partnering with Sam, campaign leaders are offering plain‑language guides, symptom trackers, and conversation prompts that help people ask about their options. The goal is simple: to give every person the knowledge, language, and confidence to discuss alternatives with their doctors.
Practical steps you can take today:
- Keep a side‑effect diary (such as Sam’s Journey Tracker) and bring it to each appointment.
- Ask your clinician what dose and duration of steroids they expect you to need.
- Explore advocacy group toolkits and Sam’s education modules.
- Check your insurance portal for guidelines before your next visit.
With clear information, supportive clinicians, and an expanding menu of safer options, patients and families can look beyond steroid therapy. For many, symptom control doesn’t need to mean living with avoidable harm. Together, we can reclaim relief without regret.