Gary’s last Vyvgart infusion was June 27th. So far he is holding steady though the ADL score shows increasing numbers. Today it was at an 8 which is 2 points higher than where he was last week. Symptoms so far are breathing, balance, and of course…the eyes. Those pesky eyes refuse to cooperate! His ears have decided to join in on the shenanigans after the Vyvgart infusions as each time he has gotten ear infections. Thank goodness that is the only issue so far. Vyvgart lowers the immune system, so he has to be extra cautious.
The heat has been especially hard on him as it is with all MG patients. We purchased a Hessaire Evaporative Cooler which has made a HUGE difference. It allows him to sit outside in the mornings/afternoons and enjoy bird/squirrel watching and of course feed treats to his chickens. 🙂
For the best news of all…Gary met his new neuromuscular doctor today. This doctor is with UT Health Neurosciences and is WONDERFUL! He gave us so much hope for the future, and we are so excited!
We don’t know what the future holds, but we do know who holds our future. ❤
As Gary always says…
HE IS BLESSED
i am blessed 
Keep the faith. God is always around to give y’all strength.
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So glad to hear your results so far. What other meds are you still on, ie; cellcept, IVIG, mestinon, … … ?
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John, I am currently on 90mg of mestinon 3x a day and the extended dose at night. I also take 30mg of prednisone. As my earlier blog states, I have tried other treatments but have not had a lot of success so far. We get excited in the beginning thinking a medicine will work only to end up disappointed.
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it is a problem deciding which way to go Vyvgart orSoliris for general Masthenia Gravis
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Gil, I did try the Soliris which unfortunately did not work for me. I have heard other MG patients have great success with it. IVIG was the only thing holding me somewhat, but I was having to take it every two weeks over two days. It still was not stabilizing me.
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Ok I will wakit and thank you very much
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