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Thread: Extavia Has anyone gone off it?

  1. #1

    Default Extavia Has anyone gone off it?

    I just went on Medicare. I found out today that my Ampyra and Extavia will cost me around $9000 a year with my United Healthcare copay. I am in relatively good condition for 65 and MS. I tire easily, have some constant numbness and some brain fog when I am tired. My neurologist said at 60 additi0onal symptoms should taper off. I am wondering about giving up the Extavia. Has anyone done this? If so what happened.

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  3. #2
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    Welcome Bookfairy! I am 67 and on Copaxone. I am not thinking of stopping and no one at the MS Center has suggested that I should.

    I think it would be a gamble but I understand why you are thinking about it w such high copays.
    There comes a time when silence is betrayal.- MLK

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  5. #3
    Distinguished Community Member agate's Avatar
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    Bookfairy, how nice that you've come back!

    Extavia is Betaseron with another name, isn't it?

    I haven't been on it but at least one person around here was on Betaseron for quite a few years and regretted going off it. Maybe she will speak up.

    I'm not sure where the neuro gets the information about additional symptoms tapering off after age 60. I've heard of a theory that in some people MS "burns itself out" at a certain age (55 or thereabouts) but so far as I know it's only a theory and only for some people.

    Have you looked into the financial assistance program for Extavia?

    It sounds as if you've been getting along pretty well with Extavia and Ampyra in the picture. I don't know if I'd want to rock that boat but $9,000 is quite a hefty sum.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member BBS1951's Avatar
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    Whoa. If you can afford it, I wouldn’t upset the apple cart. Cat Dancer went off Betaseron and regretted it.

    Would a different Medicare supplement, such as BCBS pay better for your Meds?

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  9. #5

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    I have a call into my Neurologist to discuss this. Thank you for responding.

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  11. #6

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    Extavia is Betaseron. I looked into Ampyra's assistance program and if you have Medicare you don't qualify. I tried to apply for a grant and didn't qualify. I have a call into my Neuro and should hear back tomorrow. Thank you for your reply.

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  13. #7
    Distinguished Community Member BBS1951's Avatar
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    If you have a moment, let us know what you learn.

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    Bookfairy, our friend Joy posted this awhile back. She was on Medicare:

    http://www.braintalkcommunities.org/...ion+assistance

    ANN
    There comes a time when silence is betrayal.- MLK

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  17. #9
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    This was and is good information. I am so glad Joy posted it. I might have to return to it later in the year. Ann, I hope you can pull it up again if that happens.
    Virginia

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  19. #10
    Distinguished Community Member agate's Avatar
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    Joy is still helping us!

    I think that those Websites she mentions should be included in the Useful Websites sticky thread. If nobody minds, I'll approach the moderators and see if that can be done.

    One of them---theassistancefund.org--seems to have stopped functioning but the other two look as if they're still around.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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