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Old 04-25-2012, 08:58 PM
nappy nappy is offline
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Join Date: Aug 2010
Location: NE Ohio
Posts: 200
Ampyra stopped working?

Has anyone been on Ampyra with success and then found that it stopped working for them?

I have been on it since September. I was in phyical therapy when I started and had improved in my walking speed and endurance.

Now for the last month, I feel like it isn't working. The only thing I can tell from it is when I don't take my second dose I really feel like my legs are heavy and hurt more.

I think I will call the neuro about but wondered if anyone else had something similar happen. If I go off it for a while, will the honeymoon return?

I was hoping to do the MSWalk this weekend, but now I am having second thoughts.

Thank you for your replies.
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Old 04-26-2012, 11:11 AM
ru4cats ru4cats is offline
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Join Date: Dec 2010
Location: Montana
Posts: 499

I had the same reaction, but after almost two years on Ampyra, I have come to believe it isn't so much that the Ampyra has stopped working or has leveled off, but rather the nerve damage has continued to progress. If I don't take Ampyra, there is a noticeable, negative change in my walking. I am "test driving" an Walkaide, and yesterday I noticed the electrical pulse wasn't as strong as the day before. After a while, I remembered I hadn't taken Ampyra that morning, and so I took it a few hours late. 30 minutes later, the electrical pulse was amplified BIG TIME! Ampyra is definitely working!
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Old 04-26-2012, 05:26 PM
skreynolds57 skreynolds57 is offline
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Join Date: Jan 2006
Location: New Mexico
Posts: 152
I would agree that the ongoing progression of nerve damage could offset the effects of Ampyra. Been the case for me. Unfortunately for some of us, DMDs don't help (we don't have attacks), and other drugs can only do so much against a worsening situation.
sometimes you can't make it on your own
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Old 04-26-2012, 05:26 PM
celeste1 celeste1 is offline
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Join Date: Apr 2012
Posts: 1

Some of you know that aminopyridine has been used for years and is a great med for energy and helping legs. now, Ampyra comes along and my pharmacist has had a 400% increase in the cost of AP ingredients. This is would force me to Ampyra, but with insurance it's $550/month.
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Old 04-26-2012, 07:39 PM
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Scooter24 Scooter24 is offline
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Join Date: Oct 2008
Location: Charlotte NC
Posts: 1,170
I have the same thing but I feel its more that your body has gotten accustomed to Ampyra, kinda like a new car smell after a few months you don't notice it anymore but when you don't drive it a week or so and get in that new car smell is still there.
Plan for the future, but not too hard; itís not your decision anyway
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