¿Qué importancia tiene el ejercicio para los pacientes de leucemia mieloide aguda en el camino hacia la recuperación y la remisión?

Ejercicio de imagen con Sue Maillard

Sue Maillard, Clinical Specialist Physiotherapist in Pediatric Rheumatology and Musculoskeletal Pain

Los pacientes con miositis juvenil y los padres de niños con esta enfermedad a menudo se preguntan por la importancia del ejercicio en el proceso de recuperación y remisión.

That question was recently addressed at the Global Conference on Myositis presentation and in a video with Cure JM by physical therapist Sue Maillard, a foremost expert, clinical specialist and physiotherapist in Pediatric Rheumatology and Musculoskeletal Pain at Great Ormond Street Hospital in London.

Maillard’s approach to physical therapy and exercise is that “exercise is vital,” she said, “and we need to think of it as medicine”—a complement to prednisone, methotrexate, and IVIG. Maillard noted that the right exercise regimen should:

• Repairs muscle damage
• Combats pain and fatigue
• Promotes physical development in children
• Improves psychological health
• Reduces inflammation
• Improves immunity

Maillard notes that structured exercise is safe and should begin as early as possible after diagnosis. “What you want to avoid is muscle atrophy from disuse, which results in lost strength, muscle fiber, and abnormal movement patterns,” which will, in turn, create pain and fatigue and lengthen the road to full recovery. She advises that exercises should start light to moderate but also be progressive as strength is regained.

One of the key scientific objectives is to promote the activation of certain cytokines such as TNF-A, promote the development of new muscle cells, and eliminate old or dead muscle cells, known as apoptosis, from the body. She notes that new muscle cells are created from satellite or “precursor” cells that, when stimulated by exercise, repair and grow muscle fiber. 

The “right type” of exercise, Maillard says, should be moderate, progressive, and resistive to stimulate cytokines. “Two times a week is better than once a week, but four times a week is ideal. Once a week is just not enough,” she said. Resistance exercises (e.g., using weights) is better than endurance exercise (running, treadmills), and she advises using lower weights but maximizing the number of repetitions. The ideal number of repetitions is about 30, which can be done all at once or in groups of 10 with a short break in between. Aerobic or endurance exercises can always be added later.

JM patients can work out independently but should start under the guidance of a licensed physical therapist who can assist in developing a safe long-term program to achieve the best possible JM outcomes. Maillard believes it is possible for patients who achieve remission to regain full strength. 

“It certainly can and has happened with some of my JM patients,” she says, noting that she has seen many of them flourish with hard work and dedication.For more in-depth information from Maillard, go to the following link and watch the recorded video: https://www.curejm.org/the-importance-of-exercise-in-juvenile-myositis/

Tratamientos asequibles y accesibles para la JM

Tratamientos asequibles y accesibles para la JM

Dos ponentes invitadas especiales, Michelle Vogel, MPA, IV Solutions RX, y Laurel Cherwin, BSN, RN, IgCN, Octapharma, compartieron información sobre cómo encontrar tratamientos asequibles y cuidados para pacientes con JM.

Decisión de la FDA sobre la vamorolona en la DMD

Es posible que haya oído hablar de la decisión de ayer de la FDA, que aprobó la vamorolona como esteroide alternativo para su uso en la distrofia muscular de Duchenne.

La vamorolona es una nueva alternativa a los corticoides con menos efectos secundarios que la prednisona. El fármaco pretende preservar las características beneficiosas antiinflamatorias y de fortalecimiento muscular de los corticosteroides, al tiempo que disminuye algunos de los efectos secundarios no deseados, como fragilidad ósea, retraso del crecimiento y cambios de comportamiento.

Como supimos en el anuncio de ayer, la vamorolona resultó ser segura y eficaz como terapia para la distrofia muscular de Duchenne en su nueva indicación aprobada.

Logros de la investigación

Una tarea que parecía desalentadora hace 20 años, cambiar el mundo para los pacientes diagnosticados de miositis juvenil, está ahora a nuestro alcance.

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