May 19, 2015
Tae Chung tests Matt Darnell’s reflexes on a follow-up visit for myositis care. Darnell says he wishes more patients with his condition were aware of the benefits of early physical activity.
When it comes to managing patients with myositis, says Tae Chung, fear of causing harm can be overstated. The physiatrist and director of the neuromuscular rehab team at Johns Hopkins explains that physicians often discourage exercise for patients with the rare inflammatory muscular disorder out of concern that it could raise creatinine kinase (CPK) levels and further damage weakened muscles. That fear is understandable, says Chung, considering how little research has been conducted on these patients to demonstrate their threshold for physical therapy and which exercises might prove helpful.
But, says Chung, he and his colleagues have found a way to customize rehab for patients with myositis while prescribing medications to fight their autoimmunity. “These patients want to do something to strengthen their muscles,” says Chung, “and we’ve developed rehab protocols at various stages of the disease.”
The exercises — mostly focused on high-intensity resistance and core muscle strengthening — are based on studies using objective measures, notes Chung. Protocols are modeled after numerous studies performed in Sweden, which the Swedish team has shared with him. Since the neuromuscular clinic opened last fall, Chung has been documenting each patient’s baseline strength and tracking blood values to build on this research.
Among those who appear to be benefiting is Matt Darnell. The 33-year-old engineer from Chicago knew something was amiss last summer when he had trouble doing his morning pushups, a habit he’s sustained since his years in the Navy. “I felt an overall weakness,” he says, “and was worried when it didn’t improve.”
Blood work showed elevated CPK, and an EMG was consistent with irritable myopathy. This was followed by a biopsy. But, as is the case for many patients with myositis, which resembles many other neuromuscular diseases, his neurologist couldn’t pinpoint a diagnosis. Meanwhile, Darnell was advised not to exercise.
An online search led Darnell to studies on myositis, many of which he found were authored by Johns Hopkins researchers. So he scheduled an appointment with Chung and flew to Baltimore. Chung suspected and confirmed that Darnell has immune-mediated necrotizing myopathy with HMGCR antibody, a disease entity discovered in neurologist Andrew Mammen’s lab, where Chung worked some years ago. It’s a rare complication of statins. Darnell, however, had never taken these types of cholesterol-lowering drugs.
Despite the long day spent meeting with Chung, other specialists, and physical and occupational therapists at Johns Hopkins’ Myositis Center, Darnell says he values the thorough team approach because “it puts different eyes on the same problem.”
Chung was the first of Darnell’s physicians to prescribe immunosuppresants. “We need to control the immune system,” Chung told Darnell, “so the muscle is no longer inappropriately attacked.” Darnell says he’s tolerated the drugs well, and that they have lowered his CPK.
In between the monthly visits that have followed, Darnell has stayed in close touch with Chung and physical therapists Albert (Fin) Mearsand Ruben Pagkatipunan, and occupational therapist Sarah Hess.
Roughly 70 percent of the patients with myositis now under the team’s care are from out of state or from overseas. And, because patients’ local therapists are often uncomfortable about prescribing PT, says Mears, “we spend a lot of time educating patients, practicing exercise programs and conferring with their therapists.”
At an appointment four months after he began treatment, Darnell arrives with a stack of research articles and asks Chung if he’s seen any articles about his prognosis. “It can be refractory,” Chung replies. “But I think you’re responding to the therapy. Try wearing a brace during PT, stay on the prednisone for a little while longer and continue on the immunosuppressants. And please have your therapist send me an email.”
Neuromuscular Rehab Clinic at a Glance
The Johns Hopkins Neuromuscular Rehab Clinic is among the first to focus on the diagnosis and rehabilitative management of neuromuscular disorders, including all known forms of myositis: dermatoyositis, inclusion body myositis, juvenile myositis and polymyositis. Directed by Tae Chung, the center combines the expertise of physical therapists, occupational therapists and speech language pathology therapists. When needed, referrals are made to neurology, rheumatology and pulmonology. Treatments are individualized, based on diagnosis and severity of disease, which are scientifically assessed. Each patient’s baseline strength and blood values are tracked to build on neuromuscular research studies.
For more info, visit bit.ly/taechungrehab. To make an appointment at the clinic, call 410-502-2272.