Ampyra

[Ellanor]

I finally got approval for Ampyra. I took my first one last night and woke up in the middle of the night feeling like I had been hit by a bus. In the morning and for most of the day it felt like I had a really bad hangover. I did not take a second pill because frankly I need to function the next few days. Has anyone used Ampyra and had side effects? If so, do they lessen over time? I am willing to try again next week when I do not have anything scheduled, but if the side effects do not get better, I wonder if it is worth it.

[ru4cats]

Wow, Ellanor, I've been on Ampyra for three years and have never had a side effect from its use. I'm in the 30% that finds it helps some but is not a miracle drug. I do notice a difference if I don't take a pill. Hope you find some answers.

[Kimba22]

Hi Ellanor,

I never felt as bad as you, but because Ampyra can affect the ability to sleep, I only took the morning dose. (4-AP was initially used with the Russian army as an anti-fatigue medicine ... think back in the 80's).

I developed some really bad UTIs while on it, so was taken off it for that reason. (That is a known possible side effect).

Anyways, maybe you would tolerate the drug better if you took it only in the morning. Who knows.

I had a unknown, serious reaction to Rebif. I have an uncommon (less than 1%) side effect from Tysabri, but so far I am just living with it, since it's not something serious. Everyone's different.

I hope you can figure out something so you can tolerate the drug. It doesn't 'work' for everyone, though. Some people find it really helps them, others not so much. It doesn't increase your walking speed a lot even when the drug works.

You should let your neuro know about what happened.

Good luck!

[pb909]

I have been on it since 2009, started with 4-AP before moving to Ampyra when it was released. I have not had any issues but have seen posts off-and-on from others that have encountered them.

[Ellanor]

Thank you for your reply. I am going to try again, but I will wait a week because I need to have nothing on my schedule. The pharmacist told me that it may lessen over time, or it may not. I was just so hopeful and now I feel discouraged.

[merganser]

My first couple of days of Ampyra were really awful, too. My feet hurt and I was really dizzy and wonky. I took just one dose a day for a week trying to ease into it. It got a little better and ended up taking the 2 doses a day for almost 2 months. I finally couldn't stand the side effects anymore and stopped. I was experiencing pain in my feet and legs anytime I stopped moving, like when I tried to sleep at night.

I think I was definitely walking more easily but the side effects out-weighed the benefits so I stopped. The foot/leg pain went away immediately but I was pretty dizzy for about a week after.

[Ellanor]

Thanks to all.....I have started it again and so far no major side effects, I have been on it a week, but have not noticed any improvement in my walking. The DR at the drug company said to try and give it 6 weeks. As long as I can tolerate it, I will give it my best shot.

[pyablon]

I've been on it for 2 weeks and have had no adverse reactions. As RU4cats stated...I know it's working because I feel the difference as I near he 10th hour and it begins to wear off.

[ru4cats]

An update:

My progression has continued, and I'm no longer able to walk any distance without assistance. However, I have noticed that Ampyra continues to help with the walking I DO do. I also believe there are other subtle areas where it helps, but because these areas can't be "verified by concrete statistics", it doesn't qualify for use. This is too bad, and I wish an exception could be made. I really believe this drug could help others.