Dealing with a chronic condition like MG, with its changing symptoms and uncertainty, can often lead to a breaking point. You may find treatment that helped before no longer works. Or you might be frustrated because you want to be able to perform better at your job or a certain task.
Whatever the reason, “hitting the wall” is common. “Myasthenia gravis is a chronic disease, and it’s complicated because everybody presents a little differently,” says David P. Randall, DO, director of neuromuscular neurology for Advocate Health’s Illinois and Wisconsin Division, who is based in Park Ridge, Illinois. Through the course of the disease, people can go through many phases that might change over time, sometimes quite suddenly. “It’s unpredictable,” he says.
There’s lots of good news, though. The FDA has approved many drugs that not only help manage symptoms and reach a broader range of people with MG, but offer options for treatment tailored to the individual. More neurologists are learning about MG, and teams of specialists and other professionals are coming together to pool their knowledge.
In short, there are more options than ever before to meet you where you are in your MG, says Randall.
Meeting the Wall
“Walls are different,” says Randall. A wall for one person might be they’ve not been well enough to get back to work. Or if they can, they might not be able to perform at the level they wish. Others might never have had treatments that really helped.
“Part of hitting that wall is what they want to accomplish,” Randall says. “We need to find out what their goals are. Why did they hit this wall?”
More recently, what used to stump and frustrate patients and doctors alike offers opportunity. “When someone hits the wall, it’s a great time to sit back with their care team.”
Gathering the Team
Not only neuromuscular specialists, but primary care doctors, physical therapists, mental health professionals, pulmonologists, surgeons, pharmacists, and others can bring large pieces of the MG puzzle to the table. Working together is essential for honing in on the best treatment for each person, Randall says.
Physical therapists
“Physical therapy is a great team member — they can maximize what you can do,” Randall says. “There’s limitations because it is a fatiguing disease, but working specifically to try to attain goals is what you can do. It’s a useful adjunct in keeping the body moving.”
While MG can make it hard to control voluntary muscles, PT can help strengthen muscles that get deconditioned because of fatigue. PT also can help stretching and target chronic pain. “Some people are weak in certain limbs, and they become more painful,” such as in their hips, Randall says.
Primary care doctors
A big component for neurologists is working with the person’s primary care doctor to make sure all the meds are working together and don’t clash, Randall says. If there’s not continuous communication between the neurology specialists and primary care, patients might be put on other meds that can interfere with MG and make the condition worse.
“The next piece of that puzzle would be evaluating what treatments they’ve had. There are a lot of treatments available, and revisiting with their care team and analyzing what they’ve tried and why it might have failed” can throw light on what next steps to take, he says.
Mental health professionals
Some people get great benefits from working with psychologists or psychiatrists to address the stress of having a rare chronic disease and getting support through complications, Randall says. Physical and emotional stresses in other parts of your life can make MG worse too, he notes.
“People often feel alone with MG because it’s an uncommon disease and it presents very differently” in different people,” Randall says. “No one feels more alone than when they’re not feeling well.”
Support groups are helpful too in helping you find company and others who understand. Randall’s team refers patients for support through local organizations as well as their team in Illinois.
New Medications Offer Hope
Another angle is reconsidering medicines, to see what they haven’t used before, or in different combos, Randall says. Before 2017, there were no FDA treatments for MG. Some treatments used then, such as steroids, had serious side effects. “We have a whole host of treatments for MG now. That wasn’t an option previous to the last five years.”
There’s still no cure for MG, but the newer drugs can improve the symptoms: eculizumab and ravulizumab, which suppress your immune system; efgartigimod, which lowers the level of antibodies that make MG active; nipocalimab and rozanolixizumab, which treat people who are anti-acetylcholine receptor (AChR) antibody positive or anti-muscle-specific tyrosine kinase (MuSK) antibody positive; and zilucoplan, which treats people who are anti-acetylcholine receptor (AChR) antibody positive.
Still, health care providers have to figure out which treatments might work best for different patients. One med that works for one person’s symptoms might not work for someone else.
“If we’re able to treat them well, they may have very limited symptoms and these weaknesses” will improve, Randall says. “At Advocate (Health Care), because we have all the people, it's been great to find a team to get these things done, to give these patients the chance to do well.”
Patients Are the Greatest Teachers
Randall says he enjoys working with MG because of the courage and spirit of people who live with such a rare and chronic condition. “It’s a fascinating and frustrating disease,” he says. “Our patients are some amazing people — what they’re able to accomplish despite the unpredictability.”
“My hope and expectation for most of the patients is to get them to the point where they can function better and accomplish what they need to.”
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
David P. Randall, DO, director of neuromuscular neurology for Advocate Health’s Illinois and Wisconsin Division, Park Ridge, IL.
Yale Medicine: “Myasthenia Gravis: New Drugs and a Road to Individualized Treatment.”
Mayo Clinic: “Zilucoplan(subcutaneous route).”
Muscular Dystrophy Association: “FDA Approves Johnson & Johnson’s IMAAVY™ (nipocalimab-aahu) a New Treatment for Myasthenia Gravis.”
