Nuevas directrices de tratamiento para el lupus eritematoso sistémico en niños y adultos
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Dr. Susan Manzi 0:00
Hello everyone. I'm Dr. Susan Manzi. I am the chair of the Medicine Institute at Allegheny Health Network in Pittsburgh. I also direct our Lupus Center of Excellence and I have the privilege of serving as the Medical Director for the Lupus Foundation of America. And I'm here today to tell you some very exciting news. The American College of Rheumatology has just released the 2025 new guidelines on the treatment of systemic lupus.
We could not be happier to see these guidelines in print for the first time. They're very important guidelines in treatment because the goal is to ensure that no matter what doctor you see anywhere in the country, that you're going to get the best care because we want best practice medicine to ensure you get the care that you deserve. so having guidelines helps physicians know what to do and kind of have the general guidance that we need. Keep in mind though, that decisions are individualized because every person living with lupus is unique. So these are simply guidelines and they don't dictate what medications you have to use at any given time, but they do provide best practice. around the different agents that are now available. And it's very exciting because we have a lot more agents in the pipeline and many more that have been approved for use in the last several years. So what did these guidelines tell us? Well, good news is that they're applicable to not just adults, but also children, which is a great thing because we know that many people living with lupus are young adults or young children.
The other important piece is that when we're treating our patients with lupus, we want people to be in remission. That means no evidence of disease activity. And if we can't get there, then we want the lowest disease activity possible. So that's the goal. And that's what we want to focus on. Not a little bit better, but a lot better. We also are very focused on minimizing side effects and toxicity because as you know, many of the medications that we use, prednisone or corticosteroids is one of them, have a lot of side effects and can actually cause damage to our organs and we want to minimize that. And overall, we just want to improve the quality of life of people living with lupus and improve survival. And these guidelines are set out to do that.
So what are some of the things that were emphasized in these guidelines that are important? One is hydroxychloroquine, right? This is an agent that is an anti-malarial which used frequently in people living with lupus and it's highly recommended for anyone that has lupus and it's a good agent. It's generally well tolerated and it's been known to treat manifestations of the disease but also has evidence of preventing some progression in certain organs that can be involved in lupus. So that is a mainstay for us. A lot of emphasis, as we've seen even in previous guidelines on treatment of kidney disease specifically, is minimizing corticosteroids. They work very quickly, so we need them often to get disease under control quickly, but then the goal is to taper to the lowest dose possible, less than five milligrams a day, or completely off if possible. Because they're effective, but the side effect and risks are too great to try to maintain at any higher dose than five milligrams a day. And as I mentioned, ideally off entirely.
So what do we do if we can't have corticosteroids? Well, now we have a lot of other options. We have some of our conventional immunosuppressive agents that are very, very effective, but we also have a lot of new biologics that are out there. Bulimumab, anaphroleumab, voclosporin, other agents that now are available to us that we can start to use early. And the idea is starting them early and allowing us to get off of corticosteroids. And so some of the guidelines will go through specific treatments for different organ systems, like if your blood counts are impacted or if you've got you know, inflammation around your heart or lungs, they'll provide some guide rails or guard rails around what may be the most effective way to treat it. I won't go into the details of those because again, that's, that's on an individualized basis, but we have a lot more options now. And very importantly, and this is really important, is monitoring, right? We don't want you to be diagnosed with lupus and then get lost to follow up. That regular monitoring is important to make sure nothing new shows up that we need to address early because we want to prevent damage to the organs and we need to measure that on a regular basis to make sure the medication or the disease itself is not causing irreversible damage.
And then finally, even though focusing on your lupus is important, we are also have to focus on your heart health. So preventing any kind of cardiovascular issues, focusing on healthy bones and a lot of that is minimizing steroids to prevent osteoporosis. Also, appropriate cancer screening is important. And then finally, making sure we're preparing you for the best pregnancy outcomes possible if you are of reproductive age. So overall, could not be more excited that these guidelines are now released and I'm sure you'll be hearing a lot more about it. So stay tuned and The Lupus Foundation of America is always a great source for the most important and accurate information.
Esta semana, el Colegio Americano de Reumatología (ACR por sus siglas en inglés) publicó (en inglés) directrices actualizadas para el tratamiento y manejo del lupus eritematoso sistémico (LES), la forma más común de lupus. Las nuevas directrices buscan alcanzar y mantener la remisión o una baja actividad de la enfermedad, reducir el daño orgánico, disminuir las tasas de morbilidad y mortalidad, y reducir los efectos secundarios y las toxicidades relacionados con el tratamiento en personas con LES. Las directrices también hacen especial hincapié en la toma de decisiones compartida y animan a pacientes y profesionales de salud a colaborar para identificar las preferencias de tratamiento. Las directrices actualizadas, basadas en el consenso, son aplicables a niños y adultos con LES.
Las directrices proponen:
Uso generalizado y rutinario de hidroxicloroquina, minimizando la exposición a glucocorticoides e introduciendo oportunamente medicamentos inmunosupresores estándar o biológicos (p. ej., ciclofosfamida, ácido micofenólico, azatioprina, metotrexato, belimumab, anifrolumab y terapias anti-CD20). La selección de estas terapias debe individualizarse según las manifestaciones de la enfermedad y los órganos específicos afectados. El ACR subraya la importancia de la toma de decisiones compartida entre las personas con LES y los profesionales sanitarios, ya que múltiples factores influyen en las opciones terapéuticas.
Citas de seguimiento regulares para evaluar la actividad de la enfermedad lúpica y los cambios en los síntomas, con una evaluación anual adicional para detectar el daño a largo plazo causado por el lupus.
Uso intensivo de esteroides intravenosos a dosis altas durante los brotes graves que afecten a órganos vitales, seguido de una reducción gradual de las dosis orales de esteroides.
Reducción gradual del uso de esteroides a 5 mg diarios o menos, controlada por el médico, idealmente suspendiéndolo en un plazo de 6 meses si el lupus se mantiene estable.
Además, cuando los datos basados en la evidencia, la experiencia clínica y las experiencias y preferencias reportadas por los pacientes no favorecen claramente un medicamento sobre otro, las recomendaciones terapéuticas deben presentarse sin un orden de preferencia específico. Es crucial que todas las decisiones terapéuticas se adapten a cada paciente e involucren una toma de decisiones compartida, lo cual es vital para respetar los valores y las preferencias de las personas con LES.
Las nuevas directrices reconocen que puede haber dificultades para implementar estas recomendaciones debido al acceso limitado a pruebas, médicos especialistas, procedimientos y medicamentos. Si las terapias recomendadas no están disponibles, no se toleran bien o no se prefieren, se recomienda discutir tratamientos alternativos razonables. También se fomenta la atención colaborativa entre reumatólogos(as) y otros especialistas.
Cabe destacar que las directrices revisadas pueden ayudar a abordar las disparidades en la atención médica, que afectan significativamente los resultados para las personas con LES. La Fundación de Lupus de América (LFA por sus siglas en inglés) se ha comprometido a promover la equidad en la salud del lupus, identificando y abordando las causas de las diferencias en los resultados de salud en diversas poblaciones que viven con lupus. Obtenga más información sobre Lupus AIM (en inglés).
Este anuncio marca un primer paso importante hacia la medicina de precisión para el LES. Las directrices completas se enviarán para su publicación en Arthritis & Rheumatology y Arthritis Care and Research. La LFA se compromete a mantenerle informado(a) sobre el proceso. A medida que se disponga de más detalles, le proporcionaremos herramientas y recursos para entender mejor el LES y el papel que estas directrices desempeñan para ayudarle a lograr resultados óptimos.