Maryann
Forum Replies Created
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Maryann
MemberMay 12, 2023 at 8:48 am in reply to: Which ALS-related science, research, etc. topic is on your radar right now?I take Riluzole, Radicava, RELYVRIO and 2 weeks ago I started Healey Platform regimen f (Abbv 7262) – hoping I am on the drug and not the placebo but it’s 3 to 1 so I’m hopeful.  I notice I am more wobbly when I take the Radicava 10 days out if the month.
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Maryann
MemberMay 24, 2023 at 7:08 pm in reply to: Which ALS-related science, research, etc. topic is on your radar right now?Lynn,
I feel wobbly when I take the radicava. I keep a journal each month and my movement is worse during the 10 days on cycle
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Maryann
MemberMay 24, 2023 at 6:38 am in reply to: Which ALS-related science, research, etc. topic is on your radar right now?Lynn
I mix relyvrio with warm water. Mix it really well and let it sit 15 min or so to dissolve, then drink it down with a straw. It’s tolerable if it’s mixed well.
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Maryann
MemberMay 22, 2023 at 2:25 pm in reply to: Which ALS-related science, research, etc. topic is on your radar right now?No worries. Thank you
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Maryann
MemberMay 22, 2023 at 11:55 am in reply to: Which ALS-related science, research, etc. topic is on your radar right now?The Riluzole was approved right away. Radicava was approved with 2 or 3 weeks. Relyvrio my insurance denied and I received it for free through Amylyxx manufacturer while the appeal process took place. It took a few months for it to ultimately be approved.
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Maryann
MemberMay 22, 2023 at 6:43 am in reply to: Which ALS-related science, research, etc. topic is on your radar right now?Thank you. It’s for me though not my husband. I will let you know how things go.
Maryann
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Maryann
MemberMay 20, 2023 at 8:33 am in reply to: Which ALS-related science, research, etc. topic is on your radar right now?Joan
How do you feel on regimen f. I take riluzole, radicava and relyvrio and I started regimen f 4/25. Do you notice any changes with regimen f?