Despite different initial experiences, both Tom and Caitlin faced various ups and downs before landing on their current treatment plans. Whether it’s an insurance change, unwanted side effects or a desire for a more effective treatment plan for you, navigating the MG treatment journey may not always be easy. “I’ve tried several treatments that simply didn’t work for me before I got to the treatment plan that I’m on now,” shares Tom. Caitlin adds that it doesn’t feel good when a treatment doesn’t work. “When it first happened to me, I definitely allowed myself to feel all the emotions that came with it.” But even though she initially felt down and frustrated, Caitlin was motivated. 

Work with your healthcare team

It’s important to trust your healthcare team and have honest conversations with them. This not only helps facilitate a strong doctor partnership, but it also helps you gain the confidence to advocate for yourself. “Whenever I tell my neurologist I don’t think my medication is working,” says Tom, “her reaction is ‘Let’s go back and see what we can do.’” Caitlin agrees: “If one treatment didn’t work, my doctor always had something else in their back pocket. And I knew that they were going to advocate for me. So, after a treatment doesn’t work it’s always, ‘OK, what’s next?’”

Dr. Charulatha Nagar, a neurologist who works with people living with MG, believes the patient-doctor partnership is key. “Developing a relationship with your physician is so important.” She goes on to say, “I really like when patients come to me with particular questions, tell me their concerns and are honest if they want to try something new.”

Doctors’ appointments can go by fast with a lot of important material to cover. You may go in with topics you want to discuss and forget them once you’re there. Dr. Nagar says, “For whatever reason, some questions may go unanswered at an appointment, but asking about a new MG treatment plan shouldn’t be one of them.” It may also be helpful to talk to your doctor about what to expect from a certain treatment so that both of you are on the same page. Don’t be shy to ask about your options either, even if you’re not sure where to start—your doctor is there to help you figure it out! Dr. Nagar encourages bringing notes to discuss at appointments and using your patient portal if you do forget to discuss anything. You can also use this handy discussion guide for talking to your healthcare team about MG.

The evolving treatment landscape

As the treatment landscape advances, feeling comfortable asking questions and chatting through options with your healthcare provider may be beneficial and empowering. This educational overview of common MG treatments may help provide information on the treatment options available. Consider the differences between these options and the role they could play in your treatment plan. These options run the gamut—from steroids, which are taken orally and used to minimize the production of antibodies that can cause some MG symptoms, to bloodstream therapies, which place healthy antibodies into the blood to help treat some kinds of MG. Another treatment type that is part of the MG treatment landscape is biologic therapy. Biologic therapy has been used for decades to treat other conditions, and there are two subtypes that are approved for various types of generalized MG (gMG). Biologics are created from living things or products of living things, such as humans, animals and microorganisms (e.g., bacteria, fungi). Remember to always ask your doctor about whether a treatment could be right for you.

Partnering with your doctor can also help determine if a particular dosing schedule or treatment plan may work better for you. “Patients may wonder if the medication regimen is working for them,” says Dr. Nagar. “If they come to us and say they’ve tracked their symptoms and noticed an increase in symptoms, we can revisit the treatment and, if applicable, their dosing strategy.”

“I think it really starts with education and self-awareness,” says Caitlin. “Some treatments take a little bit longer to see the effects and so I had to be patient. But if I got to a point where I was supposed to see changes and didn’t, I think it’s OK to message a provider and talk about it.”

 “I wasn’t noticing any improvements and that’s when I worked with my doctor to change my dosing schedule,” says Tom. It’s important to note that some treatments do have flexibility when it comes to treatment frequency. As always, be sure to talk to your doctor if you’re not seeing treatment results and about your treatment options in general.

Tracking your MG symptoms

When Tom starts a different treatment, he pays attention to his day-to-day living and quality of life. He tracks things like his ability to walk or climb stairs and fatigue.

The  Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is one way to track MG symptoms. It’s made up of eight questions about daily activities. Additionally, the revised Myasthenia Gravis Quality of Life scale (MG-QOL15r) is a 15-item survey that evaluates how your MG symptoms affect your emotional well-being and ability to be independent. Using symptom tracking tools at your doctor’s appointment can help you and your healthcare team develop a better MG treatment plan for you. “Bring your MG-ADL score or the MG-QOL15r survey to your appointments,” says Dr. Nagar. “It helps us paint a more accurate picture of what’s working and what’s not.”

Your MG treatment journey may come with ups and downs. However, tracking your symptoms and partnering with your healthcare team may help you better navigate it to get on a treatment plan that works for you—and to aim for a greater everyday with MG.

Speak with your doctor to learn more, and download the MG management discussion guide for questions to ask at your next appointment.