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What are your thoughts on the expanded Vyvgart approval for generalized MG?
The FDA recently expanded the approval of Vyvgart and Vyvgart Hytrulo to all adults living with generalized myasthenia gravis, including people who are seronegative.
What are your thoughts on this update, and for those who are seronegative, does this shift change how hopeful or seen you feel within the MG treatment landscape?
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9 Replies
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Unfortunately Vyvgart did not work for me. But may work for others.
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I’ve been on Vyvgart Hytrulo for nearly two years with one infusion per week for four weeks on and four weeks off. It has effectively managed all my symptoms especially the vision issues, mouth and tongue control, etc. I still have the muscle weakness and fatigue to a certain degree but I am able to live a comfortable life compared to what I was facing. My infusions are actually injections into the abdominal area and take about 5 minutes. I’m in and out of the infusion center within about 15 minutes.
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you can also give yourself the injection at home, very easy.
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Vyvgart infusions worked well for 2 yrs. then stopped completely. When it works it’s great! I hope it helps others.
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I have been on Vyvgart infusion since November 2022 which is now at 20 cycles since the start.
I’ve found it works well to minimize my symptoms and improve muscle strength, improve my breathing ability, and reduce muscle pain.
My MG ADL scores generally go from a 5 back down to a 3 score after infusion cycle is finished.
I’m very pleased to hear that Vyvgart has been approved for MuSK , Seronegative, and LRP-4 types of gMG.
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Was approved this week and will be starting Vyvgart Hytrulo sometime next week. Hopeful of a positive experience.
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just sent in preapproval. let me know how it goes
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Vyvgaart gave me a temporary benefit with the loading dose, but the benefit was done within a month. Same thing happened with Imaavy.
The company rep. and my neurologist say that Vyvgaart has helped a number of people with gMg. My ADL score is usually about 15-16. That did not change much and did not change for long.
Unfortunately, my condition is labeled as “refractory,” meaning it is resistant to treatment. If your gMg is NOT refractory, Vyvgaart reportedly has been beneficial.
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I am (gMG, seronegative) starting it next week. I’m a bit nervous as I know it can cause flu-like symptoms to start and I dread that. But I’m hopeful that it all help me.
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