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...
Hello all. Hope all is well with all of you. My post concerns the soliris treatment. I am looking to get information on the proceedure, side effects and any other important or helpful hints.
I am hoping to get my first infusion in August. What should I look forward to? How long is the session? What should I expect on the first day? What is the protocall? How often? I have a port, will they use that?
Any and all information will be helpfull. Thanks, Al
I have put lots of information on the blog, in regard of soliris..it is an expensive drug so you should check with your insurance if you are covered
now to the protocol from soliris. the way it works is as follows:
before you be able to get a injection, you will have to have the first 2 weeks a vaccine against menengitis, be registered with rsm doctors then after 2 weeks you will be admistreted an injection this is the beginning.
when i first became mg patent i was going to get soliris, but after doing my extensive reseach about side effects,due to the danger of it, i decided against .
so please befor you get involve with it reseach all the sides effects that comes with soliris, then after you get a total understanding make your own mind, but be very careffull.
i am a very conciensous person in regard of medications, and belive me when i said this drug is very dangerous,
also because of the covid19, if you decide to go for it, waitt untill we are out of this dangerous situation
best of luck
Andre