July 2026 - How we got here

Vanessa receives Vyvgart injections once a week for four weeks and then none for four weeks for her Myasthenia Gravis (see here to learn what MG is). She's been on the injections for almost a year. Prior to that she was receiving Vyvgart IV. Vyvgart has worked well for her, but in the last few cycles of Vyvgart injection we've noticed the effects are not lasting as long as they did while on IV Vyvgart. Each day has gotten the smallest bit harder for Vanessa. Contributing factors could be some illnesses in the first half of the year followed by personal stresses that have made it difficult for her body to "catch up" and feel "normal". Not sure if IV vs injection is the change that's impacting how well it's worked, or if it's just the stressors of life that have hit this year (the stressors hit closer to the same time we noticed effects not lasting as long).

We've been monitoring her strength levels daily for the last week and her breathing. She's been in a myasthenic crisis three times before, most recently in January 2024 where she was admitted for PLEX. While her breathing is not as difficult this time, her speech and strength are. We spoke with her neurologist this week and the Dr believes PLEX is what's necessary to get her back to where she was in January and give the Vyvgart a boost. We've waited too long to seek this treatment in the past and aren't doing it again. 

The danger is that while Vanessa's speech is what is primarily impacted, her breathing could quickly become a problem. During our last stay, we met an internal med doctor who gave us his phone number and agreed to direct admit us, bypassing the ER, should we need it again. We will call that doc today to see if that offer still stands, else we will head into the ER.