Treatment with ULTOMIRIS

I have received IVIG, no results. Then Vyvgart, which worked pretty good but my doctor is trying Ultomiris. I have had a load dose, 1 infustion (8 weeks ago), and I am sitting here getting an infusion as I type and read things on this site. I definitely improved on Ultomiris, but I still have my bad days and some good ones. I can tell that I have gained some strength back during the 8 weeks, and am glad I don't go every 4 weeks and once a week for 4 weeks. I have a swallowing issue that plagues me and I have been off work for the last 10 weeks. Without the stress of work, I still have a lot of fatigue overall. I can't imagine having to go back as I hadn't realized how much I was trying to do while dealing with this sickness. It is tough and I am not sure I have the capacity to function in a full time job as it was part of the thing that drove me to seek mental help. Ultomiris works, but I don't think anything is going to bring back normalcy 100 percent. I am grateful for the good days.

Hi there! I posted this question on our Facebook page to see if I could garner any insight for you. So far there are 2 responses. This is a newer treatment so you may nit find too many who have had experience with it yet! Here is the link to the Facebook post: https://www.facebook.com/MyastheniaGravisHU/posts/pfbid02HquamrcpP1NvCmFfsmrpHeU77UTuppG58vj73geKdKCzfrycmqNZRrmTL9cZoNf5l - Kaitlyn (Team Member)

Jmark... Are you taking ULLTOMIRIS infusions/considering??? I to am curious, hoping someone how has had them will respond. Best of Wishes Sally Farrier... Myasthenia-Gravis.com (team member).