and what a ride it is! It has been two weeks since Gary’s last dose of Vyvgart.
The positives:
1. He can talk without sounding like Elmer Fudd,
2. For the most part he can eat most anything without choking, and
3. He continues to have a WONDERFUL attitude and stays busy with his consulting business at home.
The will get better in time:
1. He requires his cane for short distances and his walker/wheelchair for longer distances,
2. His breathing is labored when he exerts himself. Simply walking into another room is difficult,
3. His eyes continue to cause issues. The right eye likes to close. When it is open, it chooses to look off in the wrong direction. He sees double and has lost his peripheral vision,
4. Swelling in his body has increased, and
5. His skin has become very thin and bruises/tears easily.
We saw his neuromuscular doctor today who feels it is time to change the course of treatment. He is going to take Gary off Vyvgart and put him on Ultomiris. We are not familiar with this drug and will be doing a lot of research in the coming days. He is going to begin decreasing Gary’s prednisone medication. This will be a long slow process due to the length of time he has been on it. Regardless, Gary is thrilled to see there is an end in sight for prednisone! Always looking on the bright side! 😉 All other medications remain the same.
This will be a beach weekend with two of our grandkids. Gary always looks forward to his time on the golf cart with them. Watch the news for crazy golf cart racer on the beach this weekend! HA!
While at times it seems we are taking one step forward and two steps back with this disease, we know who is ultimately in control, and we trust HIS timing.
As Gary always says…
I AM BLESSED
i am blessed 