Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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sseibert3 12/21/2021

You guys probably alreadey know about this but I thought I would post them.

https://myastheniagravisnews.com/news-posts/2021/12/21/champion-mg-trial-ultomiris-rapidly-eases-symptoms-generalized-mg/?utm_source=MYA&utm_campaign=828b7cdc77-MYA_ENL_4.0_US&utm_medium=email&utm_term=0_4679a2b172-828b7cdc77-74230161

https://myastheniagravisnews.com/news-posts/2021/12/20/fda-approves-vyvgart-for-adults-with-most-common-form-of-gmg/?utm_source=MYA&utm_campaign=828b7cdc77-MYA_ENL_4.0_US&utm_medium=email&utm_term=0_4679a2b172-828b7cdc77-74230161

Have a great day -

Scott

Rhanson 12/22/2021

I read the abstract and did a little more searching and it does sound promising. I wonder how much it will cost and how long it will be before it can be obtained. '
Thanks
Merry Christmas
Russ

sseibert3 12/22/2021

My VA Neuro thinks maybe available in 6 to 12 months for the VA system. He also says that they are quite expensive.

We shall see.

Scott

fihghter 12/23/2021

hi scott
seen article in myasthenia gravis mag after lonf research it seens to be maybe feasable for mg,
i had ti dig deep for the following information such costs,, side effects ect,

1) costs are around $6700 for a supply of 3mlters
2 it is used for pnh and require the menangitis vaccine before injections are given
3_ it is used for pnh

4_ they are side effects but was unable to discover which ones for mg

5 and most imortand unable to find if insurance will be covering this drug

fda will not forgo with explaining side effects

you van also go to the net, typing/ ultomiris for mg/ sise effects, then navigate in the site

best of luck,
happy hollidays to all
Andre

sseibert3 12/23/2021

We shall see....

S

Nanosecond 01/04/2022

Since we are having a hard time finding an effective treatment plan for me, my neurologist and I were looking forward to the FDA approval of efgartimod/Vyvgart. It had looked as if it was going to be approved for all types of generalized MG. Alas, it has been approved only for AChR positive MG. If Vyvgart is prescribed off label, without specific FDA approval, it is unlikely that health insurers will pay for what I assume is an expensive treatment. There's not much out there for us refractory seronegatives.

Speechie 01/04/2022

Ain’t that the way it always goes. Refractory seronegatives like us are rare unicorns and pharma doesn’t see much money coming from us or our insurers. I have, however, dealt with this long enough to note that when a treatment has been around a while someone is willing to let us have it too. LOL

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