My MG Story So Far

I'm Karen, a 75-year-old female from Michigan. I was diagnosed with Myasthenia Gravis (MG) in 2020 at the age of 69. Over the past few years, my journey has included one MG crisis and a thymectomy for a non-malignant thymoma. My initial treatment plan involved a combination of Prednisone, Mestinon, IVIG, and CellCept, which I took for over a year.

Navigating Cancer and MG Remission

Last year, I underwent an esophagectomy to treat esophageal cancer. Up until that point, my MG had been in remission, but the peace was short-lived. By late last year, my MG symptoms returned with a vengeance, and they were significantly worse than what I had experienced previously.

Overcoming Swallowing Difficulties

The combination of MG and the aftermath of cancer surgery created a "perfect storm" for my swallowing. Scar tissue from chemoradiation made things very difficult, but I have seen improvement recently. Thanks to a series of EGD dilations and returning to my Mestinon regimen, my ability to swallow has finally started to get better.

Current IVIG Treatments and Insurance

I have restarted IVIG using Gamunex-C. While my symptoms have improved, they aren't fully resolved. I am currently working with my insurer (BCBSM) to get Gammagard Liquid approved, as it seemed to be more effective for me in the past than the Gamunex-C. I'm hoping this switch makes the difference in reaching full symptom control.

Concerns Regarding Soliris and Future Medications

If the IVIG switch doesn't provide the results we need, my neurologist has suggested Soliris. While I’ve started the meningococcal vaccine series, I am very hesitant about the requirement to take regular doses of penicillin alongside it. I would prefer to go back on CellCept, but because my white blood cell count is currently low, my neurologist is advising against it for now.

Connecting with the Community

I would love to hear from anyone who has had a similar experience, especially those balancing MG with recovery from major surgery or cancer. I hope all of you are doing well on your own MG journeys, and I look forward to connecting and hearing your stories.