Renna

My legs get heavy and suddenly I can’t walk, my balance is off and I start tripping on my own feet.  When the meds wear off, I always worry about falling and have come close to that at times.

Hi fellow MGers –

Has anyone else who got the Vyvgart infusions, experienced a change in temperament or mood ?  The first time I got Vyvgart I felt physically much better and regained my strength and walk, but I felt off mentally / emotionally.  I can’t put a finger on it, but I just started the next round and I’m at the 1st of the 4 infusions, a…[Read more]

Hi Carol,

I loved reading that you didn’t need another round of Vyvgart from August 2022 until February this year!  I, too, got Vyvgart for the first round of infusions in December and was feeling strong and able to exercise again (cardio) but by day 30 post the 4th infusion, I started getting weak again so I just started round 2 infusions.  T…[Read more]

That’s great to hear Edward.  Vyvgart has helped me a lot and for the first time in 2 years, I am able to walk better and even do some light exercise which had to be put on hold due to risk of falling and lack of balance.

Happy New Year James!  Have you also tried IVIG?  Since Vyvgart didn’t work for you despite having the biomarkers, and you are seropositive, I’m wondering what other options your HCP might have suggested.

Thank you for explaining that Scott!  This patient support program sounds very good and I hope you get the information you need to do what’s best for your health journey.

In my case, my neurologist requested the Vyvgart and went through the insurance route then I got my OOPs sent over.  Hope 2023 offers us better days with good health.

Renna

Hi Scott,

What is the Path process?  Never heard of it.  I, too, am very needle phobic, but after a year of IVIG every 3 weeks and taking up the whole day Vyvgart seems a little easier somehow for me.  It’s once weekly for 4 weeks, but my infusions are usually done within 4 hours at most and somehow this has been an immediate improvement post in…[Read more]

I feel your pain Theresa.  I’m often saddened when my body won’t let me do the basic stuff I used to do and I’m an optimist that I will conquer this MG and be normal again; play tennis, be athletic, walk normally, get up from a chair without help, climb up the stairs and even downstairs without assistance.  My voice also fades and I have d…[Read more]

Like Theresa, I am seronegative.  Finished my 4th Vyvgart infusion last week and I feel SO MUCH better.  I pray it will stick.  I forget to take mestinon now as my body isn’t reminding me to take it, like it used to with the constant muscle weakness.  Still having difficulty with swallowing food but my legs are stronger and I’m walking better,

Hi Tracy,

Did you ever get any comments back to this question? Doesn’t look like anyone answered.  I’m curious as well since the neurologist recommended I get a thymectomy.  My CT scan came back normal, but I was told it could help achieve MG remission or even cure it (33% chance).  I was only diagnosed a year ago so I want to get the facts an…[Read more]

Hi David,
Are you seropositive or seronegative? If you don’t mind my asking, why are you hesitating to take it, if it’s approved for you?
My hope is it gets approved for seronegative MGers, as I feel much better since my vyvgart infusions began and like my old, healthy self, which is giving me so much hope to keep improving. Wishing you all the…[Read more]

Jodi,
Thanks for the detail and describing different types of MG. Based on your layout, I have early onset (diagnosed at 47 but started experiencing symptoms at 45), seronegative, gMG (affects multiple muscles and causing weakness in the legs), and to some extent droopy eyelids. Used to be athletic and played high impact sports (tennis), but had…[Read more]

Hi Edward,

I was on IVIG every 3 weeks for the past 10 months.  When I got Vyvguard approval, I had to stop IVIG for 3-4 weeks before getting the first dose of Vyvguard.  I believe it is due to the mechanism of action (MOA) with the Vyvguard versus IVIG.  With IVIG you are getting infused with IgG antibodies to boost immune function, whereas wi…[Read more]

Hi David,

I think it is too soon for long term results as Vyvguard was only approved a year ago.  I started Vyvguard infusions 3 weeks ago and after one infusion, I noticed an improvement with my legs and movement.  I also don’t take the mestinon as I used to (60mg 4 times daily), coz it used to be every 3-4 hours, my legs would get heavy, I w…[Read more]

It is good to read many of the comments and reactions to Vyvguard.  Some are doing better while others are not or still waiting to see how it will impact their health, hopefully for the better.

I am seronegative AchR and diagnosed with MG and a year ago, I couldn’t walk properly, had balance issues and was tripping over my legs, and almost fell…[Read more]