5 Signs Your Myasthenia Gravis Treatment Is Helping

How soon you can expect to see those changes depends on the treatment, says Xinli Du, MD, PhD, a neurologist at VCU Health in Richmond, Virgina. Some new biologic therapies can begin working in a matter of weeks, while some older oral immunosuppressants may take six to nine months to reach their full benefit, she says.

That’s one reason it’s important to talk with your neurologist about what improvement should look like and when you should expect to see it before deciding a treatment isn’t working.

Here are five signs that may suggest your treatment is moving things in the right direction.

1. Everyday Tasks Are Getting Easier

One of the clearest signs that treatment is helping is that MG interferes less with what you do every day.

Srikanth Muppidi, MD, a neuromuscular neurologist and researcher at Stanford Medicine in Palo Alto, California, puts a lot of weight on what patients tell him about their daily function.

According to Dr. Muppidi, improvement could mean you’re better able to:

• Get up from a chair or climb stairs without using your arms for support.
• Keep your eyes open or see clearly for longer.
• Brush or wash your hair without your arms tiring.
• Walk, exercise, or engage in other activities for longer before weakness sets in.

• Your eyelids are drooping less later in the day.
• Your vision stays crisp into the evening, instead of blurring midday.
• You can read, drive, or watch TV for longer periods of time, without double vision.

What’s considered progress depends on each person’s specific symptoms and what they find the most bothersome, he says.

2. Talking, Chewing, and Swallowing Are Easier

If you’re able to speak more clearly and for longer periods of time, that could be an indication your MG treatment is helping, says Du.

With eating, progress may look like being able to chew food with harder textures without your jaw getting too tired, or having an easier time swallowing liquid and solid foods, with no or rare episodes of choking, she says.

3. You Can Do More Before Weakness or Shortness of Breath Sets In

Another encouraging change is increased stamina for activities that were difficult before treatment.

At an in-person visit, your doctor may track progress and assess respiratory muscle strength in a more formal way with pulmonary functional testing, says Du.

But there’s also a simple at-home way to monitor respiratory muscle function using a single-breath number count, which measures how high a person can count out loud in one breath after taking a deep inhalation, she says. “A count higher than 25 indicates good respiratory muscle function,” says Du.

4. You’re Having Fewer Flares or Need Less Rescue Treatment

Another sign that your MG treatment is working is a reduction in MG flares or crises that require rescue therapy, Du says.

Another indication of better long-term control is being able to take less corticosteroid medication without your MG symptoms returning.

“Prednisone is a powerful treatment option for MG, but it carries a long list of side effects, especially when used long term. Reduced dependence on steroids is a sign of successful MG control,” says Du.

If you receive an MG treatment in cycles, also pay attention to whether the improvement lasts until your next dose. Muppidi says some treatments can have a “wearing off” effect, and noting when symptoms return in relation to your treatment cycle can help your doctor determine whether the benefit is lasting as expected.

Never reduce steroids, stretch out doses, or stop an MG medication because you’re feeling better without talking with your doctor first, says Du.

5. Your MG Weakness Is Better — Even if You Still Feel Tired

Fatigue can make it especially difficult to judge whether treatment is working, because feeling tired and experiencing MG-related muscle weakness aren’t necessarily the same thing.

You can have your well-controlled motor symptoms, but still have fatigue, says Ricardo Roda, MD, PhD, the director of the myasthenia gravis center at Johns Hopkins Medicine in Baltimore.

“All the fatigue in MG isn’t caused by motor symptoms. There are two parts to MG fatigue — and people can still have ‘central’ fatigue, which is different from fatigable weakness. It’s more similar to the type of fatigue that people with [other neurological illnesses] experience,” he says.

When MG appears well controlled, Du says she considers other issues that could contribute to fatigue, including thyroid problems, vitamin deficiencies, depression, sleep apnea, and physical deconditioning, among others.

Du recommends tracking the MG symptoms that matter to you and contacting your healthcare team if you notice a persistent or significant decline.