A recent global survey conducted by the World Lupus Federation reported that 91% of survey respondents were taking or have taken oral steroids to treat their lupus. Over 7,700 people living with lupus from more than 100 countries participated in the survey.
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The survey results revealed that a significant percentage of respondents (75%) have been using steroids for over a year, and 27% have been using them for over a decade. Additionally, 43% of the respondents reported taking above the recommended maintenance doses (5-7.5mg) of steroids as their typical everyday dose, and 58% reported taking maximum dosages of 30 mg or higher. An overwhelming number of survey respondents (96%) reported being concerned about the long-term effects of steroid use.
Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body, including the heart, kidney, lungs, blood, joints and skin. With lupus, the immune system, which fights infections, instead attacks healthy tissue. Many people with lupus take steroids (like prednisone) to help reduce inflammation. However, steroids can cause many side effects, and people who take steroids for a long time are also at risk for other serious health problems, like infections, osteoporosis and diabetes.
The survey findings also highlighted the significant burden of side effects experienced by lupus patients using steroids. Six in ten respondents reported experiencing at least one major side effect, such as diabetes, heart disease, organ failure, osteoporosis, or vision impairment. This figure rose to 70% among those who had been taking steroids for more than five years.
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Furthermore, 95% of respondents who reported steroid use also reported experiencing at least one side effect, with an average of six side effects reported per individual from a list of 19 potential effects. Some of the most prominent side effects were weight gain (77%), mood swings (54%), appearance changes (53%), and 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 Susan Manzi, MD, MPH, Medical Director for the Lupus Foundation of America, Chair of the Allegheny Health Network Medicine Institute and Director of its Lupus Center of Excellence. “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.”
Confirming the gaps in patient-centered care, 39% of respondents stated that their healthcare providers did not seek their input regarding steroid dosage decisions.
The results from this survey on steroid impact are being released leading up to World Lupus Day on May 10 in order to help increase awareness of lupus. The World Lupus Federation established World Lupus Day on May 10 to unite lupus groups around the world during Lupus Awareness Month and call attention to the disease’s impact on the millions of people globally affected by lupus. As we approach World Lupus Day, it is crucial that we continue to advocate for improved access to safe and effective treatments for lupus.
The World Lupus Federation is encouraging people around the globe on May 10 for World Lupus Day to share facts about lupus, including from this survey, and raise awareness using the official World Lupus Day Toolkit.
For further survey details, view the topline visual summary and detailed survey results.
About The World Lupus Federation
The World Lupus Federation (WLF) is a coalition of lupus patient organizations, united to improve the quality of life for all people affected by lupus. Through coordinated efforts among its affiliates, the Federation works to expand global initiatives that create greater awareness and understanding of lupus, provide education and services to people living with the disease and advocate on their behalf.
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