What happens if my gMG treatment is not working?

If you’re concerned that your generalized myasthenia gravis (gMG) treatment isn’t working, the first thing to keep in mind is that gMG treatments can take weeks to start working. It can take even longer — up to several months or longer — for gMG medications to reach their full therapeutic potential.

Still, no matter how long it’s been since the start of treatment, if you have concerns about worsening myasthenia gravis (MG) symptoms, the best thing to do is raise them with your neurologist early. Tell them exactly what you’re experiencing, and ask them how they think you should proceed with treatment.

Signs gMG treatment is not working

Signs that an MG treatment is not working include:

• the lack of symptom improvement within the expected time frame
• the return of symptoms that initially improved with treatment
• the need to adjust your habits or daily activities to accommodate symptoms that aren’t improving

“Having generalized myasthenia gravis makes it difficult for me to tell which symptoms are coming from the disease itself and which might be related to treatment. Sometimes, they can feel remarkably similar, which makes it even harder to understand what my body is trying to tell me.”

— Sarah Bendiff, who has MG

Again, keep in mind that gMG treatments can take time to work. Your doctor can tell you what to expect for your specific case and treatment type. Here are some general timelines for several medications:

In evaluating how well a treatment is working, it’s useful to track how gMG is affecting day-to-day life. To do this, you can use the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale. It lists different symptoms you can use in your own personal tracker:

• talking
• chewing
• swallowing
• breathing
• brushing your hair or teeth
• getting up from a seated position
• seeing without double vision
• droopy eyelids

If you’re building your own tracker, you might record the following each day:

• how your symptoms are progressing
• what has changed since the previous day
• when you last felt a positive or negative difference in symptoms
• any activities you aren’t able to do anymore

Share this with your doctor at your next appointment.

What to check before changing treatment

Before switching MG treatment, your doctor will generally look at how long you’ve been taking the current treatment, the dosage, the tolerability of side effects, and whether there’s anything else that may be contributing to symptoms.

What looks like MG treatment failure sometimes has another explanation. For example, symptoms could be caused or worsened by:

• infections
• thyroid problems
• medications that can worsen gMG
• skipped or mistimed doses
• stress
• lack of sleep
• an underlying chronic illness that is not well controlled

The Myasthenia Gravis Foundation of America maintains a list of medications and over-the-counter supplements that can worsen gMG symptoms. These include:

• magnesium
• certain antibiotics
• beta-blockers and calcium channel blockers
• statins
• immune checkpoint inhibitors
• botulinum toxin

If you’ve tried corticosteroids and at least one immunosuppressant and your symptoms remain uncontrolled, a neurologist may classify you as having refractory MG. However, this isn’t something that you can self-classify, and one treatment that didn’t work doesn’t meet that bar.

“It took three years of experimenting with various treatments before my MG was controlled. Each time we’d try a treatment, my hopes would rise. When the treatment failed, I became depressed. My neurologist encouraged me and advised patience. She said it can take years to bring MG under control.”

— Mark Harrington, “Tenacity keeps me going amid the symptoms of myasthenia gravis”

Changing MG treatment

If you and your doctor agree that a change is necessary, the options generally include adjusting the dose, adding another medication to the treatment plan, or trying a different class of medications. For example, if you’re already taking a corticosteroid, your doctor may also prescribe a steroid-sparing drug.

When deciding what route to take, your doctor will look at:

• antibody status
• the severity of symptoms and how crucial it is that they improve quickly
• what’s already been tried
• any other health conditions

What happens during a treatment switch?

Your doctor may have you start a new treatment before stopping or reducing the old one. Gradually changing MG medication can help avoid a potential gap in treatment, which could leave room for symptoms to return or worsen.

Keep in mind that, depending on the medication, the new treatment will likely take between several weeks and several months to reach its full effect.

In the meantime, your doctor will continue to monitor your gMG treatment response. They may also recommend short-term treatments like IV immunoglobulin or plasma exchange to keep your gMG stable until the new treatment takes effect.

Before switching treatment, be sure you know what to expect. Ask your doctor:

• how long the overlap between the two treatments will last
• what to watch out for during the transition period
• what side effects to expect, and which are considered severe or require immediate treatment
• how long it will take to tell whether the new treatment is working

When should I seek urgent help instead of waiting?

If you have difficulty breathing, new or worsening trouble swallowing, an inability to hold your head up, or weakness that gets worse over hours instead of days, call 911. These symptoms require urgent evaluation.

If you have another symptom and aren’t sure if it can wait for your next appointment, call the neurologist’s office and ask.

Always consult with your doctor before stopping or reducing any medication.