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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-13-2014, 05:10 PM | #1 | ||
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Hi everyone,
I wanted to let you all know that I'm trying something brand new for me and fairly new to the MG community in general: Hizentra www.hizentra.com . Hizentra is subcutaneous IG, and is going to be used instead of IVIG. I've used IVIG for a long time, and even self-infuse using a port-a-cath. However, my doctor and insurance company are no longer comfortable with me self-infusing, and I am unwilling to have a nurse come and "babysit" me in my home for hours on end when I don't need it and don't want to pay for it, so I requested that I be allowed to try Hizentra, as it can be done independently after an initial training. The "OK" came today and I am scheduled for my first dose next Thursday. The way it sounds, I will have to infuse once a week using 2-4 needle sites which are just placed into fatty tissue. The med will infuse via a special pump over 1-2 hours and then the med will be absorbed over the next 24 hours or so. Some of the side-effects I normally get with IVIG could possibly be less as the absorption is more gradual. We shall see. I'll post back next week after I've done the first infusion. I'm pretty excited and already have a local MG friend of mine coming over to watch as she'd like to switch, too. Thanks for reading! |
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"Thanks for this!" says: | Panorama (02-13-2014), pingpongman (02-13-2014) |
02-13-2014, 06:36 PM | #2 | |||
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I sent you an avatar image via private message.
-Mark- |
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"Thanks for this!" says: | 4-eyes (02-13-2014) |
02-13-2014, 10:46 PM | #3 | |||
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Good luck - keep us updated!
Juanita |
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"Thanks for this!" says: | 4-eyes (02-13-2014) |
02-14-2014, 11:06 AM | #4 | ||
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Good Luck
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"Thanks for this!" says: | 4-eyes (02-14-2014) |
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