[Renna]

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 to put that on hold almost 2 years ago as I couldn’t move and was at risk to fall and get hurt. Leg muscles and hip flexors are especially affected and atrophied. Doing pilates now to maintain core strength.

[Renna]

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 a few times, I had difficulty swallowing and had shortness of breath all the time.  I had been active and athletic playing tennis 2-3 times a week and walk very briskly, so MG really affected me and I had to give up active sports to avoid falling and injury about 2 years ago.  My neurologist started me on IVIG as I’m allergic to steroids every 3 weeks and 60mg mestinon 4 times daily.

Then I saw another neurologist who recommended Vyvguard and tried for the authorization despite my seronegative and miraculously it was approved.  This was a gamechanger for me.  Since starting the first Vyvguard infusion, I noticed an improvement within days!  I am on my 3rd infusion now having stopped the IVIG some time ago after a week, I was able to go up and down the stairs slowly, I’m walking with more ease, my balance is improved and thankfully my eyelids don’t appear as droopy.  I really hope Vyvguard gets approved for more of us with seronegative MG!

[Renna]

I have seronegative MG and it was very hard to diagnose for over a year and several specialists until I finally visited a neurologist who did an EMG and confirmed the MG diagnosis.  I am allergic to steroids so taking 60mg of Mestinon 3-4 times daily and IVIG every 3 weeks.

[Renna]

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 with Vyvguard, the infusion consists of IgG1 antibody fragment that binds to the Fc receptor (FcRn) resulting in the reduction of circulating IgG levels and AChR antibody levels so essentially it cancels out the benefit of IVIG.  Hope this helps and you feel better!

[Renna]

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 would start to stumble, not be able to take stairs, or get up from a chair without holding onto something, but since starting Vyvguard, my mobility and ease of motion has improved and I don’t remember to take mestinon, unless I’ve had a long day and then my legs get really tired so I take it as needed.  For me, Vyvguard has been a miracle to manage MG and I pray there are no long term negative effects.