Vaccines Before Treatment: How Our MG Community Prepares

Starting a new treatment for myasthenia gravis (MG) can bring a wave of hope, but it also requires careful preparation. Many treatments for MG work by targeting specific parts of the immune system. Because these medications change immune defenses, they can increase the risk of certain infections, most notably meningitis. ¹

To protect patients, healthcare guidelines often mandate that specific vaccines be administered before treatment can safely begin.²

We recently asked our community members to weigh in on their vaccine preparation experiences. It revealed a significant gap between what healthcare providers know, and patient awareness.

The awareness gap

For many of our community members, the news that they need vaccines before starting an MG treatment comes as a surprise. When asked if they knew that getting vaccinated could actually delay starting certain MG treatments, a striking 64% of respondents answered "No." This lack of anticipation was a common theme throughout the survey data:

• 84% of patients admitted they had "no idea" they would need to take steps like getting vaccines before starting treatment.
• 67% of respondents had never heard that some MG treatments require vaccines prior to their doctor bringing it up.

This gap exists despite the fact that patients are trying to plan ahead. When asked how much they thought about preparing for treatment before speaking with their doctor, 41% said they were thinking about preparation a lot. Yet, without clear guidance, patients don't know what they are supposed to be preparing for.

Consequently, 35% of patients took absolutely no steps related to vaccines before meeting with their doctor to discuss treatment.

Where our community turns to for answers

When members of our MG community do catch wind of vaccine requirements, where is their information coming from? The community is nearly split down the middle, with 50% of respondents stating they have looked up vaccine information in relation to MG treatments on their own, and 50% saying they had not looked into it.

For those who had heard about the vaccine requirement before their doctor mentioned it, the sources varied:

• 25% learned through an online search.
• 24% learned from their doctor.
• 13% heard it from other patients or within their MG community.
• 10% used patient websites, and 8% found information on social media.

Seeking clarity on safety

When our community members search for information, they aren't just looking for a list of shots. They are trying to understand how these vaccines fit into their broader health journey.

For example, 48% wanted to know how vaccines would impact their treatment, while 24% were looking for the specific types of vaccines required, and 22% were focused on vaccine safety.

The Takeaway: Our MG community members aren't necessarily vaccine-hesitant; rather, they are trying to figure out how a vaccine schedule might delay their treatment. They're also concerned about how vaccines may affect their current MG symptoms.

Read about Tina's experience getting the meningococcal vaccine before switching treatments.

Empowering our community

These polls highlight a critical need for proactive education. Certain MG treatments cannot start until vaccines have had time to become effective, which can sometimes take a few weeks.² So, early education is vital.

As a community, we can bridge this gap by encouraging each other to ask our neurologists about vaccine histories and requirements early in our treatment discussions.

By turning the "unknowns" into a standard checklist, we can help each other navigate our MG journeys safely, confidently, and without unexpected delays.