Ampyra? Don't think I need it?

Dalfampridine, or Ampyra, is a potassium channel blocker that is shown to improve visual function, motor skills and relieve fatigue in MS patients.
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Bubba
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Ampyra? Don't think I need it?

Post by Bubba » Fri Dec 16, 2011 3:20 pm

Everytime I go to my Neuro, they test my walking time.
I don't feel like I have slowed at all. But he wants me to start taking this stuff. They delivered it today. With all the kidney warnings on here I am wondering if I should take it? I mean, the Rebif is supposedly bad enough on your kidneys, now I am going to strain them even more with this stuff?
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.

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Re: Ampyra? Don't think I need it?

Post by CureOrBust » Fri Dec 16, 2011 4:59 pm

From my understanding, this is purely symptom relief. So if you are not looking for relief if this symptom, and your neurologist can not explain how he thinks this will improve your "health" then I do no see a reason to take it. A few years back there were papers implying the main active chemical may hinder repair / remylination.

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Re: Ampyra? Don't think I need it?

Post by milesap » Sat Dec 17, 2011 9:24 am

ive been taking it for 18 months with no problem. Every drug has side effects but that does not mean you will have any. I have had none. It improves walking distance and speed. If you do not need to improve those then don't take it.

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Re: Ampyra? Don't think I need it?

Post by Maledicte » Mon Dec 26, 2011 4:55 am

milesap wrote:ive been taking it for 18 months with no problem. Every drug has side effects but that does not mean you will have any. I have had none. It improves walking distance and speed. If you do not need to improve those then don't take it.

I never heard of it, but it really helps w/walking? i'm having horrid trouble walking (using a cane now, tripping on stairs)
And fatigue?
sounds wonderful
my bloodwork came back fine on rebif

i'm willing to try it, but whats cost? I've no insurance, pretty broke

I'm on rebif free for a year
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Re: Ampyra? Don't think I need it?

Post by CureOrBust » Mon Dec 26, 2011 5:48 pm

Maledicte wrote:i'm willing to try it, but whats cost? I've no insurance, pretty broke
Ampyra's magic ingredient is a chemical known as 4-AP. This chemical does not have a Patent on it, so you can get your local compounding pharmacy to create capsules (5 to 10mg in slow release form) for you, for a fraction of the cost.

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Re: Ampyra? Don't think I need it?

Post by Maledicte » Tue Dec 27, 2011 12:49 pm

CureOrBust wrote:
Maledicte wrote:i'm willing to try it, but whats cost? I've no insurance, pretty broke
Ampyra's magic ingredient is a chemical known as 4-AP. This chemical does not have a Patent on it, so you can get your local compounding pharmacy to create capsules (5 to 10mg in slow release form) for you, for a fraction of the cost.

well, that would be wonderful
I will discuss w/my neuro

Walking normally again is sadly something I can't remember doing anymore
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Re: Ampyra? Don't think I need it?

Post by NHE » Tue Dec 27, 2011 2:15 pm

Maledicte wrote:Walking normally again is sadly something I can't remember doing anymore
I often feel the same way at times, though sometimes my brain will torture me and give me dreams of walking, running, skiing, etc.

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Re: Ampyra? Don't think I need it?

Post by CureOrBust » Tue Dec 27, 2011 5:26 pm

NHE wrote:
Maledicte wrote:Walking normally again is sadly something I can't remember doing anymore
I often feel the same way at times, though sometimes my brain will torture me and give me dreams of walking, running, skiing, etc.
Do not expect 4-AP to have you back on the slopes or being dragged behind a boat at high speed. :sad:

I have been meaning to look further into an analogue of 4-AP which is only available as a compounded medication, but is reportedly significantly more effective, for less side effects; yet obviously less trialled. 4-AP-3-MeHO

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