Global Survey: 91% of Lupus Patients Use Oral Steroids

A global survey by the World Lupus Federation has highlighted significant reliance on oral steroids among individuals with lupus. The survey, encompassing over 7,700 participants from more than 100 countries, revealed that 91% of respondents have used oral steroids to manage their condition. Notably, the survey underscored the prolonged use of steroids, with 75% of participants using them for over a year and 27% for over a decade.

The survey's findings are particularly concerning given the widespread use of steroids at dosages exceeding recommended levels. About 43% of respondents reported taking daily doses above the advised maintenance range of 5-7.5 mg, while 58% indicated consuming maximum dosages of 30 mg or more. Alarmingly, 96% of respondents expressed concerns about the long-term effects of steroid use.

Lupus is a chronic autoimmune disease characterized by inflammation and pain that can affect various parts of the body, including the heart, kidneys, lungs, blood, joints, and skin. The immune system, instead of fighting infections, attacks healthy tissues. Steroids like prednisone are commonly prescribed to mitigate inflammation but come with a host of side effects. Prolonged steroid use can lead to severe health issues such as infections, osteoporosis, and diabetes.

The survey also highlighted the significant burden of side effects experienced by lupus patients on steroids. Sixty percent of respondents reported major side effects, including diabetes, heart disease, organ failure, osteoporosis, and vision impairment. This percentage increased to 70% among those using steroids for more than five years. Additionally, 95% of steroid users reported experiencing at least one side effect, averaging six side effects per person from a list of 19 potential issues. The most prevalent side effects included weight gain (77%), mood swings (54%), appearance changes (53%), and insomnia (52%).

Dr. Susan Manzi, Medical Director for the Lupus Foundation of America and Director of the Lupus Center of Excellence at the Allegheny Health Network Medicine Institute, emphasized the dual-edged nature of steroid use in lupus management. "Steroids can reduce inflammation and help manage lupus, but they also cause significant side effects and can lead to other serious health problems," she noted. The survey results underscore the urgent need for more treatment options that do not carry such severe side effects.

The survey also revealed gaps in patient-centered care, with 39% of respondents indicating that healthcare providers did not consult them regarding steroid dosage decisions.

These survey results are being publicized in the lead-up to World Lupus Day on May 10, a day dedicated to raising awareness about lupus. The World Lupus Federation established this day to unite lupus groups globally during Lupus Awareness Month and highlight the disease's impact on millions worldwide. As World Lupus Day approaches, it is essential to continue advocating for safer and more effective lupus treatments.

The World Lupus Federation is urging people globally to share lupus facts and survey findings on May 10 to raise awareness using the official World Lupus Day Toolkit. The Federation is a coalition aimed at improving the quality of life for people affected by lupus through increased awareness, education, and advocacy.