Extavia Has anyone gone off it?

[Bookfairy]

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.

[stillstANNding]

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.

[agate]

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.

[Sunshine]

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?

[Bookfairy]

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

[Bookfairy]

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.

[Sunshine]

If you have a moment, let us know what you learn.

[stillstANNding]

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

Only registered and activated users can see links., Click Here To Register...

ANN

[Virginia]

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.

[agate]

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.

[Virginia]

Agate, if you could get that done it would be wonderful. Isn't it wonderful, that even though gone, Ann's friend has continued to benefit the rest of us.

[agate]

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.

It's too late to edit this post but I was looking over the Useful Websites sticky with a view toward updating it and discovered that Joy's post is already there--post #22, October 3, 2015.

Edited to add: I hope to update that Useful Websites thread as soon as it can be opened up for editing but that might take time.

The MS drugs have been coming along at a fast clip, and there are many changes that need to be made in that thread.

MODERATOR 7, if you're reading here, your PM message box is full.