Ampyra

[mills1120]

Is there anyone that can comment about taking the new drug Ampyra? My Dr. wants me to start taking it and I am afraid of the side effects.. I use a walker to ambulate due to ataxia and I don't want to trip or fall. I heard that the drug improves walking speed? If thats the case, I don't need to increase my speed, just the quality of walking. I am fairly new to this website and was recently diagnosed in Dec. 2008 (I am a female, age 53). Any help regarding thoughts etc.. on Ampyra would be much appreciated.
Thank you, Mills 1120

[marilrobin]

I have been taking Ampyra for 3 weeks and it has been great. I use a cane and a scooter out of the house.  I have much less spasticity in my legs, can feel the soles on my feet. My right leg feels almost normal (if I remember what normal feels like). And my left leg--bad leg--is much better. I can wiggle my toes, and lift my foot much higher than I've been able to do in a couple of years. It is easier for me to get up from chairs, get off the floor and walk. I'm going to make an appointment with a physical therapist because I feel like I need to re-learn how to walk.

I could tell within an hour of taking the first dose that I was moving easier. But I was mentally foggy and had weird pains in my back muscles. I switched to taking it at night and the mental fog and back pains stopped. It is interfering with my sleep. I'm hoping I can solve this by timing the medicine differently. (I'm taking a single dose at night.. After a month, you take it twice in a 24 hour period.) I feel like I'm improving each day. I don't know if I'll improve more with the two doses, or if that's what you need to maintain the level of improvement.

This is definitely worth trying!  Over the years I've been on Avonex, Novantrone and Tysabri and none of them made a difference. So I was really surprised that I'm doing so well with Ampyra.

[Sarahsmom46]

I recall reading your post yesterday.  I read it but since I was not on it I didn't respond.  However, today at my neuro appointment, my doctor brought it up and said I would be a good candidate for it.  

We talked about the side effects, which like Lu said is minimal if you follow the instructions of the doctor and not try to up the doses on our own.  It is not available through your pharmacy and has to come in the mail from a specialty pharmacy like our DMDs.  

I think it is worth trying.  I have agreed to it and signed the papers today.  Lu is right again that you won't be running marathons because of it, but the quality of life issue is important to me so I will give it a go.  

I do hope anyone else on our forum who is taking it will add their feedback. We both can benefit from it.  

Take care.

Julie

[Mand125]

Bump - I would be interested to hear more about this.

Mand

[Lulu54]

Hi Mills,

There are a few people here who are on Ampyra and hopefully they will see your question.  I know a woman who is on it and loves the boost it gives her.

When they talk about increasing walking speed we are not talking about going from being a turtle to being a hare.  The increase is much more subtle.  Think about the speed you walk at now and then consider what it would be like if you can walk 25% faster.  This is not going to make you win any foot races but it certainly can improve your life if it works for you.

This drug used to be available as a compounded formula - the concerns with this was the dosage was released into the system immediately, and some people experienced seizures from the compound.  And being made from scratch in a compounding pharmacy never guaranteed the accuracy of the mix or the purity of the ingredients.

Ampyra is a time-released formula that slowly goes into your system, and from what I know the seizure risk is virtually eliminated. Most of the other side effects appear to be small and will go away after you adjust to this med or discontinue its use.  

I hope something in here is of help.  If you decide to try Ampyra, we would love to hear about your experiences.

be well,
Lulu

[gypcwmn]

Hi, I don`t know anything about ampyra, But there was a segment on the today show. www.todayshow.com and type ampyra in the search box there is some info there.

    Hope this helps. Linda