[Tom Bartlett]

Richard…these are questions that your neurologist can best provide an answer for you. All I can provide is my experience living with MG. I’ve been on treatments for five years. What I have learned is that there is not a singular answer for treating MG. as much as we hate therapies such as prednisone, it can be very helpful mitigating the symptoms of MG. I’ve in prednisone for all of those five years. I started at 60mg and now I’m take 5mg per day. However, I have, also, taken other medications along the way including CellCept and Mestinon, and then Imuran to attempt to replace CellCept. In addition, I have had IVIG, Soloris, and Ultomiris. I’m no longer on those I now receive VYVGART infusion therapy for the past 15 months. It’s helpful but not perfect.

The point is there is no magic pill nor concoction. Unfortunately, MG is a devastating, tricky disease. Treating it is hard. However, we, as patients should never settle for feeling ok.

Use your ADL score. Track it week by week. If there is an anomaly, notate what you did. Present the data to your neurologist. Use your phone/watch to track your walking steadiness, along with your other health metrics. You can see when you struggle. Again notate what was happening. A good example is excessive heat. You can been to better understand your MG.

As for prednisone, I believe we all feel it is an evil drug, however it is necessary. Go to the MGFA website (myasthenia.org) for great information as a patient living with MG. Or the MG-United site (MG-United.com) sponsored by argenx. They have wonderful content including videos of patients talking about their MG journey. And the MGFA has an MG Patient Helpline: https://myasthenia.org/Living-With-MG/Find-Support/-MGFA-Helpline#:~:text=1%2D833%2D647%2D8764, 833-647-8764. MG-United has a program where MG patients can speak one on one with other MG patients.

My advice is to listen to the feedback, but always speak with your neurologist when thinking of making any changes to your therapies.