Amprya-going off?

[IowaGirl]

I am going to try and go off Amprya for a few months. At first I thought it helped, but now I am questioning it's effectiveness. I think the only way I'll know, is to go off it and see how I feel.

Has anyone else gone off Amprya, noticed a difference and then decided to go back on it, or stay off?

Also, is this a medication you need to be weened off? I have a call in to my case manager to see how I need to go off it, but just looking for other's experiences.

I just can't justify the cost and not getting the results any more.

Thanks peeps!

[Seasha]

Hi IowaGirl,

I have been on Ampyra for about 5 months and have thought about going off it too. For me, it's hard to know how effective it is. (I not one of those who can throw their cane away or see very noticeable changes.) Still, I think that my energy level is better. Some days my walking is better and some days not....I never know!

The main reason I'm staying on it, rather than test it like you by going off, is that I had some definite side affects when I started and don't want to have to go through it again. The verdict is still out for me.

Good luck on your decision! btw, I am a former Iowa girl from DM

[Scooter24]

You most likley won't have to stop taking it more than a few doses to see if you are being helped by it. If I miss 1 single dose it lets me know quickly.

No need to taper off of it, question has been asked and answered previously, I have run out twice when I changed coverage and went w/o for 2 weeks no problem other than I could hardly walk.

Alot of people say the same thing that they feel like it is no longer making as big a difference, but IMHO I think we have just gotten used to the new you and just don't realize it. Kind of like the smell of a new car, you get used to it but after driving another car for a while and getting back into it again the smell is noticable again.

[GardeningMSer]

went off involuntarily, now back on

Hi IowaGirl,

I'm 62, male, dx'd in 2000. Started using a scooter around 2005, been on Tysabri since 2007, started Ampyra in May 2010.

Within a month or two I was walking much better, but at the end of 2010 my former employer changed on-line pharmacies and didn't move my Rx from the old one to the new one. The new one - E****ss-Scripts was a disaster, multiple computer systems that didn't talk to each other, multiple pharmacies that had been bought but not merged, etc, etc resulted in two or more weeks of calls by me, my dr, and nurses. My walking deteriorated badly. At the beginning of May I went through another pharmacy change and didn't get Ampyra for at least a week. My walking deteriorated during these months.

As I write in early July my walking has improved greatly as has my balance. I'm now in my third week since taking my Tysabri infusion and would normally be tripping, but I'm walking better than I have in years.

There are other factors that may be having a positive effect, after many years of a very unhappy marriage and 40 years living in New England I moved west about 8 months ago and started dating. At the end of May I met a wonderful woman, we've been together every possible moment, our mutual happiness is incredible, our compatibility amazing. Ahhh, LOVE! I've lost weight and gotten stronger, but some of that might be due to a lot of very enjoyable exercise ;-)

Summary: I'd stay on Ampyra.

Good luck!

I am going to try and go off Amprya for a few months. At first I thought it helped, but now I am questioning it's effectiveness. I think the only way I'll know, is to go off it and see how I feel.

Has anyone else gone off Amprya, noticed a difference and then decided to go back on it, or stay off?

Also, is this a medication you need to be weened off? I have a call in to my case manager to see how I need to go off it, but just looking for other's experiences.

I just can't justify the cost and not getting the results any more.

Thanks peeps!

[pebbles5087]

Headaches

I have been on Amprya, for 2 days. I'm already noticing a change in my walking. But due to headaches I'm already thinking of coming off. I guess thats one of the main side effects.

[IowaGirl]

Thanks for the replies! That's why I love this forum!!

@Seasha-I am in the same boat as you, just don't know if it is working. I was fortunate to not have any side effects, so I can risk going off for a few weeks. I thought when I first got it I noticed improvement when I worked out with tripping. Now I feel I am back to square one. I will let you know how it goes. My MS neuro is from Des Moines and my son lives in Des Moines. I am about 2 hours North of Des Moines.

@Scooter23-the nurse case manager confirmed the same thing as you. She said no need to taper off and I would know within a few days. I still work full time at at school, and just want to give it a try before I go back. I really didn't have major "walking" problems when it was suggested I go on Ampra, just weakness and occasional tripping with exercise and walking distances. Like you mentioned, I may just not getting use to it. Hopefully, I will know in a few weeks.

@GardeningMSer: all I can say to you is.....YOU GO! Good for you!! Sometimes getting rid of extra baggage is the best medicine we can get! Keep up with your "exercising!"

[IowaGirl]

UPDATE: Went off Amprya and by the next day I was dragging my feet and could not walk like I had being on it.

Question answered, it was working! Now I know and could tell by the next day. So.....I will not be going off it or missing a dose!