When Can I Stop My Steroids? The Patient Perspective on Glucocorticoid Usage in Adult Inflammatory Myopathy

    Jesús Loarce-Martos, James B Lilleker, Eve Alder, Jo Goode, Hector Chinoy
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    TLDR Patients need better information about the risks of long-term steroid use.
    The study surveyed 122 patients with idiopathic inflammatory myopathy (IIM) to understand their perspectives on glucocorticoid (GC) treatment. The majority of respondents were female (79%) with a mean age of 50 years. The median daily dose of prednisolone was 15 mg, and the median treatment duration was 5.3 years. Adverse effects (AEs) were common, with sleep disturbances (93%), mood swings (86%), and weight gain (86%) being the most frequently reported. Female patients reported more severe AEs compared to males, and only 54% of respondents felt adequately informed about the potential risks of GC treatment. The study highlighted the need for better communication regarding the risks associated with long-term GC use.
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