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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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I have been taking Soliris for about 5 months. For me, it's magic. After my 1st two doses I felt like I was in 95% remission. So far there's no sign of it reducing the positive effects. Last summer I was fully functional on even the hottest days. It was a good feeling to not have to think about staying cool all the time.
I receive 1200mg every two weeks. There's a little sensation after infusion, but it's mild. Currently, you must be AcHr positive for the drug to work. The worst part is the cost. If I didn't have great insurance I would have to pay $400,00 per year. My Neuro says they are working on some new drugs that will cost less. I hope you are all doing well. I am almost forgetting about MG on many days. It's a good drug. Be careful to get all 'i's' dotted and 't's' crossed with your insurance company. I had to be my own advocate getting my Doc, my insurance company and the drug company (Alexion) on board. Good luck. Be your advocate. Regards |
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"Thanks for this!" says: | azwild (01-03-2019) |
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