Seguimiento de los pacientes con lupus eritematoso sistémico: lo que no está en las guías / Follow-up of patients with systemic lupus erythematosus: what is not found in the guidelines

Se comentan una serie de medidas para los pacientes con lupus eritematoso sistémico, que no suelen estar en las guías. Al enfermo muy bien controlado durante años tendemos a ir reduciendo progresivamente la dosis de hidroxicloroquina, sin bajar de aproximadamente 600mg/semana. Este fármaco aconsejamos tomarlo por la mañana en los pacientes con insomnio, por la noche en los casos de dispepsia y en los que presentan prurito de tipo acuagénico que separen la toma de la ducha, y que esta sea con agua lo menos caliente posible. No usamos el tratamiento con prednisona a días alternos, y excepcionalmente dividimos la dosis en ¾ antes del desayuno y ¼ antes de la cena. En consultas deberíamos dedicar entre 20 y 30min por paciente, para hacer una buena práctica clínica y humana. En nuestra unidad hemos analizado el seguimiento de 112 enfermos consecutivos, y el 71,4% tenían una sintomatología no explicable por el lupus, y solamente al 8,9% los derivamos a otros especialistas, probablemente, por nuestra capacitación general como internistas. Sugerimos que conocer la opinión de los especialistas dedicados a tratar a los enfermos con lupus puede ser de interés, pues a partir de sus experiencias, se pueden programar trabajos bien diseñados, que permitirían el avance en el conocimiento de esta enfermedad (AU)

A series of measures in the management of patients with systemic lupus erythematosus (SLE) which usually are not found in the lupus guidelines are discussed. In the lupus patient who has been well-controlled in the long term, the dose of hydroxychloroquine should be progressively reduced, without decreasing more than approximately 600mg per week. We recommend taking this drug in the morning in patients with insomnia, at night in those with dyspepsia and to separate the intake of the drug from the shower (and the water should be as cool as possible) in those patients with aquagenic pruritus. We do not use prednisone on alternate days and exceptionally divide the dose into ¾ before breakfast and ¼ before dinner. Twenty to 30min should be used per patient in every scheduled visit to assure a good clinical and human practice. We analyzed the follow-up of 112 consecutive patients from our systemic disease unit and found that 71.4% of them had symptoms that were unexplained by lupus and we only referred 8.9% of them to other specialists, probably because of our general training as internal medicine doctors. We suggest that knowing the views of SLE specialists might be of interest since, well-designed studies that would allow to progress in the understanding of this disease could be performed based on their experience (AU)

Follow-up of patients with systemic lupus erythematosus: what is not found in the guidelines.

A series of measures in the management of patients with systemic lupus erythematosus (SLE) which usually are not found in the lupus guidelines are discussed. In the lupus patient who has been well-controlled in the long term, the dose of hydroxychloroquine should be progressively reduced, without decreasing more than approximately 600 mg per week. We recommend taking this drug in the morning in patients with insomnia, at night in those with dyspepsia and to separate the intake of the drug from the shower (and the water should be as cool as possible) in those patients with aquagenic pruritus. We do not use prednisone on alternate days and exceptionally divide the dose into ¾ before breakfast and » before dinner. Twenty to 30 min should be used per patient in every scheduled visit to assure a good clinical and human practice. We analyzed the follow-up of 112 consecutive patients from our systemic disease unit and found that 71.4% of them had symptoms that were unexplained by lupus and we only referred 8.9% of them to other specialists, probably because of our general training as internal medicine doctors. We suggest that knowing the views of SLE specialists might be of interest since, well-designed studies that would allow to progress in the understanding of this disease could be performed based on their experience.