Cuvitru vs Vivgard
Hi, I was diagnosed approx. 3 years ago with seronegative Myasthenia Gravis. I am wondering if anyone has experience being on Cuvitru and Vyvgart and pros or cons of each.
I was diagnosed with MG in 2017. It has progressed over these few short years. I have been on IVIG and Pyridostigmine since that time with other meds such as Mycophenolate prednisone etc. The progression has kept me home as I have much difficulty traveling more than 10 miles.
Last week they added Vyvgard as a trial for me and I was very apprehensive about it as written side effects were pretty severe. However, the night after I got a whole night sleep (something I have not been able for 20 years or so) and the following day at 6 AM woke up bright and feeling energized for the first time in 20 years. The 2nd day following I was not quite as energized and did not sleep as well at night but we will see how the following weekly infusions do.I hope the addition of Vyvgard proves helpful. Please keep us updated. Thinking of you and sending positive thoughts and well wishes. -Julie (team member)
Thanks for the response. Good luck with the Vyvgart. It is worth pursuing. I was in a trial for Vyvgart and it worked very well.
Keep trying with Medicare . There are also organizations that can help you get funding. Vyvgart staff can assist you with a personal case manager to help. They have been wonderful. Vyvgart for me has been great. Sometimes I don't even feel sick. That is until I try to go up steps. But it is getting better.
Medicare won’t let me use Vyvgart as it would be off label. And expensive. And Cuvitru is a new one to me. I’ll have to research that one!
Hope you’re doing wellHi
just in case it may be helpful I shared a link to some information on managing health costs - https://myasthenia-gravis.com/resources-cost. Wishing you well. -Jessica (Team Member)
