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Ampyra
I was just wondering if anyone here takes Ampyra? I got a brochure in the mail today inviting me to a seminar about it... I have read up on it a little bit and it really sounds like something I would like to try... If anyone does take it please take a minute to tell me about it... Thanks in advance...
I'll be praying,
Carol
I'll be praying,
Carol
Thanks Lulu for the information that Ampyra won't cost more than 40 dollars. I was under the impression it was just a special price for trial offer. So glad it continues.
I did see my Neuro yesterday and she said to go ahead and give it another shot. Pain or No I might see what if it will help. Anything to help me walk better would be much appreciated. I will let y'all know how my trial works out. ;)
To Carol: If you can get a months supply, it might be worth a try. We are all different and react different to drugs, so what causes me pain, might not cause you any.
Jessica
I did see my Neuro yesterday and she said to go ahead and give it another shot. Pain or No I might see what if it will help. Anything to help me walk better would be much appreciated. I will let y'all know how my trial works out. ;)
To Carol: If you can get a months supply, it might be worth a try. We are all different and react different to drugs, so what causes me pain, might not cause you any.
Jessica
Carol, you would have to work this through with the insurance, doctor, and accorda folks to figure it out. I can't guess whether you would be covered or not, because it is not in my experiences.
WW - it sounds like you and your doctor are doing some serious risk vs benefit discussions. It's a tough one to do.
WW - it sounds like you and your doctor are doing some serious risk vs benefit discussions. It's a tough one to do.
We (doc and I) ruled out ampyra because it can cause an increase in dizziness and balance problems and I have a (well controlled) known kidney disease...gilenya ruled out because I have asthma and a side effect is diminished lung function...sheesh.
Thanks Lulu...
I am on Sterling Option 1 which is a medicare based insurance and then I also have medicaide... Will these insurances cover this or no? Thank you in advance...
Carol
I am on Sterling Option 1 which is a medicare based insurance and then I also have medicaide... Will these insurances cover this or no? Thank you in advance...
Carol
Carol,
I do take ampyra and find it makes a difference with my walking stamina, There is anecdotal evidence that it also helps with ON, cognition and heat sensitivity.
The down side of it that Ess mentions is it is not particularly good for people who experience neuropathic pain. The drug does such a good job of completing the eroded nerves signals that it allows the pain to also be increased. I hope that maes sense.
I do hope you will talk it over with your doctor and see if it is something that might be worth trying.
As for the cost, if you have insurance, Accorda has a plan that no one should have to pay more than $40 per month. That is not a trial offer, but an ongoing on. Of course there are exceptions to this - if you have govt insurance or live in MA you can't get this help.
good luck,
Lulu
I do take ampyra and find it makes a difference with my walking stamina, There is anecdotal evidence that it also helps with ON, cognition and heat sensitivity.
The down side of it that Ess mentions is it is not particularly good for people who experience neuropathic pain. The drug does such a good job of completing the eroded nerves signals that it allows the pain to also be increased. I hope that maes sense.
I do hope you will talk it over with your doctor and see if it is something that might be worth trying.
As for the cost, if you have insurance, Accorda has a plan that no one should have to pay more than $40 per month. That is not a trial offer, but an ongoing on. Of course there are exceptions to this - if you have govt insurance or live in MA you can't get this help.
good luck,
Lulu
Carol,
I can tell you, by my own personal experience, that Ampyra, in and of itself, doesn't cause any additional pain, but them again, I don't have much pain associated with my MS symptoms, either. So, by my own personal experience, Ampyra, doesn't cause any pain. I mean, I do have the MS Hug, and the weather (heat and humidity), make it more difficult, than anything else. So, if you are concerned that Ampyra will cause you more pain, by my own personal experience, it will not.
-- Socrates2k1 (aka Stan)
I can tell you, by my own personal experience, that Ampyra, in and of itself, doesn't cause any additional pain, but them again, I don't have much pain associated with my MS symptoms, either. So, by my own personal experience, Ampyra, doesn't cause any pain. I mean, I do have the MS Hug, and the weather (heat and humidity), make it more difficult, than anything else. So, if you are concerned that Ampyra will cause you more pain, by my own personal experience, it will not.
-- Socrates2k1 (aka Stan)
Yes Stan it is for your gate and balance... I really want to try it but I'm so afraid because of the pain it apparently causes... I'm already in so much pain due to my MS and RSD so I'm not sure if it would be something I could tolerate... Oh but to be out of this wheelchair would be so amazing...
Shell, thanks for the info... and thank you all for the comments... I'm going to talk with my doctor about it the next time I go to see what he thinks... The thought of being able to walk again excites me but the thought of adding more pain to what I already endure scares me to death...
I'll be praying,
Carol
Shell, thanks for the info... and thank you all for the comments... I'm going to talk with my doctor about it the next time I go to see what he thinks... The thought of being able to walk again excites me but the thought of adding more pain to what I already endure scares me to death...
I'll be praying,
Carol
Carol,
I take Ampyra, and have been for a few months now, and like my Rebif, I'm blessed that I can take it, at no cost to me (well, and that's because I don't have any insurance, right now).
However, what it's for, I can't remember, is it for your "gate"?
-- Socrates 2k1 (aka Stan)
I take Ampyra, and have been for a few months now, and like my Rebif, I'm blessed that I can take it, at no cost to me (well, and that's because I don't have any insurance, right now).
However, what it's for, I can't remember, is it for your "gate"?
-- Socrates 2k1 (aka Stan)
Like Ess, I don't think I can deal with Ampyra either. I did try it for a week and almost came unglued with the increase in neuropathic pain. Last year that was. But I have to say it did help while I was taking it. Better bladder control, and easier walking. I just couldn't bear the pain.
I am going to ask my Neuro today if I can try it again. I have a couple months worth that won't be out of date until later this year. Ampyra is shocking expensive too. I was lucky to get an introductory offer of 40 dollars a month last year for 3 months worth but otherwise my copay would have been $232 a month. I went ahead and got all I could even though I wasn't taking in hopes of trying again. Gasp! I am hoping by balancing a bit more gabapentin with the Ampyra I can avoid the rise in neuropathic pain.
Also I saw where they are doing trials of 5 mg Ampyra, (normal dose is 10mg twice a day) and that might be a potential dose we could take without setting off more neuropathic pain. But who knows when the trial will be over, whether it passes muster, and when the lower dose drug will be available.
Jessica
I am going to ask my Neuro today if I can try it again. I have a couple months worth that won't be out of date until later this year. Ampyra is shocking expensive too. I was lucky to get an introductory offer of 40 dollars a month last year for 3 months worth but otherwise my copay would have been $232 a month. I went ahead and got all I could even though I wasn't taking in hopes of trying again. Gasp! I am hoping by balancing a bit more gabapentin with the Ampyra I can avoid the rise in neuropathic pain.
Also I saw where they are doing trials of 5 mg Ampyra, (normal dose is 10mg twice a day) and that might be a potential dose we could take without setting off more neuropathic pain. But who knows when the trial will be over, whether it passes muster, and when the lower dose drug will be available.
Jessica
http://www.medhelp.org/posts/Multiple-Sclerosis/Ampyra/show/1359721
http://www.medhelp.org/posts/Multiple-Sclerosis/ampyra/show/1375460
http://www.medhelp.org/posts/Multiple-Sclerosis/FYI---Patient-release-for-Ampyra-assistance/show/1259208
http://www.medhelp.org/posts/Multiple-Sclerosis/ampyra/show/1375460
http://www.medhelp.org/posts/Multiple-Sclerosis/FYI---Patient-release-for-Ampyra-assistance/show/1259208
I know there are a few here who take Ampyra but at the moment I'm drawing a blank.
I wish I could take it, really, and asked my MS NP about it. She said it is known to make neuropathic pain worse, and since I'm already on a big dose of Lyrica for that, I'm not an Ampyra candidate. :-(
Anyone else?
ess
I wish I could take it, really, and asked my MS NP about it. She said it is known to make neuropathic pain worse, and since I'm already on a big dose of Lyrica for that, I'm not an Ampyra candidate. :-(
Anyone else?
ess
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