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.
More serious exacerbations can require fast-acting treatments such as intravenous immunoglobulin (IVIG) or plasma exchange, which are also used to treat a myasthenic crisis. If you’re having fewer exacerbations and going longer without needing these rescue treatments, it suggests your regular treatment is keeping the disease more consistently controlled, she says.
You might also notice you’re needing pyridostigmine (Mestinon) less often once your immunotherapy treatment is working, or you’re experiencing less symptom fluctuation between doses. In fact, many people with MG no longer need pyridostigmine once other treatment has had time to act. But, as with any medication, don’t make changes to your dosing schedule without talking to your care team.
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.
Looking for other potential causes is important because fatigue can have several causes and, by itself, doesn’t necessarily mean MG treatment needs to be intensified.
Du recommends tracking the MG symptoms that matter to you and contacting your healthcare team if you notice a persistent or significant decline.
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