P125 Patient’s perception of the effectiveness and safety of corticosteroids in systemic lupus erythematosus

ObjectiveGlucocorticoids (GC) have been used for the treatment of lupus for over 60 years. Current recommendations suggest using the lowest dose for the shortest period to reduce adverse effects (AE). Nevertheless, little is known about the patients´ perspective on steroid use. Our study aims at understanding the patient’s perception of the effectiveness and safety of steroid therapy.MethodsA survey was conducted in SLE patients (2019 EULAR/ACR classification criteria). Results were analyzed using Stata 14.0.Results114 patients (90% women) with a mean age of 47 years were enrolled. 49.5% had been diagnosed for >10 years. 68% had at least secondary education. 7 (6%) never took GC.Of the 107 patients who ever took GC, 36% took them for 1–5 years, 22% for 5–10 years, and 30% for >10 years. Half the patients took a median dose of 20mg. 89% agreed that GC were very important in controlling their disease with almost half considering them essential.70 patients (65%) experienced AE but more than 2/3 belived that the benefits outweighed the risks. Longer disease duration (>10yrs) was associated with more AE (p=0,027).Patients were taking an average of 2.3 drugs for lupus. 98% are/have been on hydroxychloroquine. 80% reported at least 1 other immunosuppressant (azathioprine 56%, methotrexate 28%, cyclophosphamide 18%, mycophenolate mofetil 16% and rituximab 15%). 33% of patients felt that GC were superior and 22% were similar to the other treatments. On average, they reported an improvement of 4±2 symptoms, most frequently arthralgia/arthritis and constitutional symptoms.In 75% of the patients stopping GC was attempted and of these, 36% had to restart GC, 65% within 6 months. The main reasons were arthralgia (52%) and fatigue (38%). Interestingly, patient with a higher degree of education felt that the benefits of GC outweighed the adverse events (84 vs.69%, p=0,019).ConclusionsIn our cohort, although most lupus patients are aware of the risks involved in steroid treatment, they still considered them helpful and worth taking. Higher literacy was related with a better compliance for steroid intake. Understanding the patients´ perspective is crucial for a successful steroid withdraw campaign.