Steroid Shock: 91% of Lupus Patients Use Oral Steroids, But At What Cost?
A massive global survey by the World Lupus Federation reveals a startling truth: 91% of lupus sufferers have taken oral steroids to manage their condition. Over 7,700 patients from more than 100 countries spoke out about the treatment’s impact on their lives.
Long-Term Steroid Use Taking a Heavy Toll
The survey uncovered that 75% of respondents have been on steroids for over a year, with 27% enduring the treatment for more than a decade. Even more troubling:
- 43% take doses above the recommended maintenance level (5-7.5mg) daily.
- 58% reported steroid doses at 30mg or higher—known to fuel serious side effects.
- A massive 96% expressed deep concern about the long-term health consequences of steroid use.
Lupus and Steroid Side Effects: A Toxic Mix
Lupus, a chronic autoimmune disease, causes the immune system to attack healthy tissue, sparking inflammation and pain in organs like the heart, kidneys, lungs, and joints. Steroids, such as prednisone, help reduce this inflammation but often come with a nasty downside.
The survey highlights the brutal impact steroids have on lupus patients’ health:
- 60% reported at least one major side effect, including diabetes, heart disease, osteoporosis, organ failure, or vision problems.
- For patients on steroids over five years, this jumps to a shocking 70%.
- 95% of steroid users experience side effects, averaging six per person. Top complaints include:
- Weight gain: 77%
- Mood swings: 54%
- Changes in appearance: 53%
- Insomnia: 52%
“We know that steroids can reduce inflammation and help people with lupus to manage the disease, but we also know that steroids cause a range of side effects and can lead to other serious health problems,” said Dr Susan Manzi, Medical Director for the Lupus Foundation of America. “These survey results, unfortunately, confirm how reliant people with lupus are on steroids, including over long periods of time, and they underscore the urgent need for more lupus treatments to become available that won’t have such significant side effects.”
Patients Want a Voice But Are Often Ignored
Another alarming find: 39% of respondents said their healthcare providers never asked for their input on steroid dosage decisions. This highlights a troubling gap in patient-centred care.
Raising Lupus Awareness Ahead of World Lupus Day
The World Lupus Federation is releasing these eye-opening survey results ahead of World Lupus Day on May 10. The day aims to unite lupus groups worldwide and spotlight the struggles of millions battling the disease.
To boost awareness, the Federation urges the public to share lupus facts, especially about steroid use, using the official World Lupus Day Toolkit.
The message is clear—lupus patients desperately need safer, more effective treatments that don’t come with a heavy price tag of side effects.
