Finding and sticking to a treatment plan

After getting your diagnosis, it’s common to feel a range of emotions. Evan,* who was diagnosed with MG around 20 years ago, can still recall those feelings. “At first, you’re overwhelmed, not having any idea what you’re in for,” he explained. “The first phase is really just acceptance, and the next phase becomes about exploring different treatment options to see what works and what doesn’t.”

Understanding the different MG treatment options that are available is an important first step—and it requires continuous evaluation. Since MG symptoms can fluctuate,  you may want to keep revisiting what the right treatment plan is for you. And since the treatment landscape is always evolving, you’ll want to stay up to date on the latest developments. You can discuss the different treatment options with your healthcare team to learn what they entail and how long you can expect to be on them, based on your situation, as everyone’s MG journey is different. It’s important to understand up front that MG treatments may take time to produce noticeable results. For one of Evan’s first treatments, he was told it would take about six months to experience any changes in his MG symptoms. “That was a daunting prospect,” he shared. “For me, there had to be really careful monitoring—and sometimes, combining—of different treatments to find the optimal result.”

Caitlin,* a nurse who lives with MG, remembers not feeling any physical effects from her early treatments but getting lab work done that did indicate some changes, which allowed her to have a productive conversation with her doctor. She made sure to bring up specific areas where she wanted to see improvement so her doctor could know what her goals were. “At the point of being newly diagnosed and initiating certain treatments, there were a lot of frustrations because I was more symptomatic. I didn’t know what treatment would be needed, but I shared my frustrations and what I was still experiencing,” Caitlin said. If you need help setting and articulating your own goals, download the MG Treatment Goals Action Plan to get started!

Getting into an MG management routine

Once you have a treatment plan, another step is incorporating it into your lifestyle in a way that helps you easily adhere to it. Caitlin suggests keeping a calendar (digital or physical) to track your appointments so you can easily coordinate trips, work and other commitments around them. She also likes to prep her outfits and meals ahead of time, laying out comfortable clothes and packing snacks the night before an appointment. An additional measure you can take is minimizing any potential commuting issues: Is your car filled with gas? Have you confirmed the bus schedule? Is a loved one prepared to drive you? Finally, as a nurse, Caitlin has seen people in different treatment scenarios “make the most of their visits” by bringing a movie to watch on a tablet or having a heated blanket for chilly waiting rooms.

Another part of your MG management routine is ongoing communication with your healthcare team. Since it can be difficult to initially assess whether your treatment is working, it’s crucial to continually talk to your doctor about what you’re experiencing so they know what to check on. Evan emphasized the importance of building a healthcare team that’s suited to your needs. “I think personal connection, and someone who has your best interests at heart, is very important. Someone who’s willing to continually look for and reassess ways to make your treatment better because it’s not one-size-fits-all. One treatment may be right today, but your condition can change,” Evan noted.

Caitlin encourages building strong self-awareness of your MG triggers so you feel empowered to know when it’s time to check in with your doctor. “You know the goal of your care. You have to advocate for yourself in that way,” she said. “I love my nursing job because I promote that autonomy I want people to have for themselves, while also doing it for myself.”

Initiating those conversations is important because they may lead to an adjustment in your treatment plan, if necessary. Caitlin shared, “If you’ve been on treatment for a long time and you’re still not seeing symptoms improve, I think it warrants a conversation with your doctor. Same thing goes if that treatment has been working for years, and suddenly, things that didn’t trigger you before are now becoming an issue.” She continued, “Earlier in my journey, I wish I knew I didn’t have to get to a point of frustration to see changes in my treatment plan. It’s OK to ask for things you need. You don’t have to suffer silently.”

Ongoing symptom tracking

Since MG symptoms can fluctuate, picking a reliable symptom-tracking method can help you document the things you need to share with your doctor when it comes time for your appointments. Caitlin uses the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale, a tool that helps identify the impact MG has on your daily life by assessing the severity of your symptoms.¹ Many doctors use the MG-ADL scale to measure symptoms as well, so it may help to use this shared language when describing your symptoms to them. The tool includes eight daily activities related to common MG symptoms, each of which is measured on a scale of zero to three, with a score of zero representing normal function and a score of three representing the greatest severity of symptoms.¹ The total score can range from zero to 24 points—in general, the lower the score, the less one’s daily activities may be impacted.¹

Minimal symptom expression (MSE) is defined as a total score of zero or one on the MG-ADL scale, and it may be a goal to discuss with your healthcare team! You can also use the MG-ADL scale to guide your doctor discussions in other ways, like assessing the effectiveness of your treatment, realizing your symptom triggers and gauging your ability to do certain activities.

Evan, who describes himself as pretty active before MG, isn’t losing hope for being able to get back to some of the adventures he used to love. “Hope is a very powerful thing,” he shared. “I still have my parachute in the garage because my personal goal is to get back in the air and start skydiving again. It motivates me. It keeps me going.”

Bringing loved ones to appointments, attending support groups and connecting with the MG community in general may also be helpful as you navigate your long-term treatment journey. Caitlin stressed the importance of not taking everything on alone. She noted, “There’s value in connecting with that community. ‘You’re with us now, we’ll take care of you.’”