Evrysdi Scheduled for Delivery

[DeAnn R]

Today my first shipment of Evrysdi arrives. Although I’m excited, I’m a bit apprehensive. Switching from Spinraza brings up all kinds of questions. Like, will it work as good? Am I making the right decision? Can I switch back if it doesn’t work? Despite those questions the big draw for me is that minimal labs are required. None for me in fact. My neurologist prescribed it over a telemedicine appointment just before Thanksgiving and three weeks later here it is. Well, any minute now.

Taking a daily medication bears more responsibility on my part. Since it’s a temperature and light sensitive med, there are particulars in handling it. It’s also something that from my understanding should be taken after a meal and around the same time each day. Even with those requirements I find it less stressful than coordinating Spinraza day.

My main concern is side effects. I’ve heard others mention stomach upset. Since it seems I have a sensitive stomach as I age I’m hoping that won’t be an issue. Time will tell I guess.

I’d love to hear how things are going for you! Have you made the switch? Starting for the first time? Sticking with Spinraza? No treatment? What factors into your decision?

[Alyssa Silva]

That’s so great to hear, DeAnn! Please keep us posted on your journey.

[Dennis Turner]

Do you end up with a copay?

Please let us know how it all works out for you!

[DeAnn R]

Dennis, no copay. I have Medicare as primary with Silverscript for part D. Medicaid is my secondary but looks like it went through through my Medicare drug plan.

[Losmi]

great news DeAnn, fingers crossed that evrything goes well!! It is so nice that after this nightmarish year you will actually be able to start 2021 with new hope:)

[Kelly Miller]

Congratulations DeAnn! Definitely let us know about it.

I’m scheduled to get my first dose on Tuesday. This will be my only treatment b/c I opted not to go for Spinraza. I really didn’t want to deal with the injections since I have so many bones in my back from my spinal fusion. I was also extremely worried about the side-effects. I couldn’t get the idea of severe headaches out of my head, so to speak. Now, Evrysdi is a liquid that goes in my g-tube. Sounds like they understand SMA people.

I was told yesterday I would have a $70 per shipment co-pay, but we applied for financial aid and got it for all of the co-pay. All I’m going to have to pay is a shipping fee every time of $5. Do you have that DeAnn?

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