I started Ampyra this week (thanks Wiz!)

If you are on Ampyra or 4AP, how long were you on it before you knew that it was working?

If you went off it, did you notice any side effects from stopping it?

I'm not willing to spend $$ on drugs that do nothing for me, and so far I don't see any difference.

Don't know if you read my thread I posted, RW...
I was on it about a week or two when I noticed that my foot drop wasn't as bad, and I was walking a lot steadier.

But the med just did such a number on my stomach I finally gave up on it. I had gone off of it for a couple of weeks in June, but my neuro asked me to try it again. I went back on in July, but then I called him this week about my stomach/gastro pain and he said just go off. They're getting feedback about patients' side effects, and they are varied (the nurse didn't tell me what they were).
I've been off of it three days, and I notice my foot is already stiffer and harder to pick up...darned if you do, and darned if you don't...

This is scary. I am waiting for my ins. to get the papers together so I
can go on Ampyra.

I have all ready serious stomach problems I don't need anything else to
aggravate it.

I think that some of my stomach problems are all ready from some of the
meds. I am taking. How much can a system take before it rebells?


Jappy

Hi Riverwild,
I think it varies tremendously from person to person. I could feel it in my nervous system after a few daze but it took 2 or 3 weeks until I began to see it improve my walking.

Jappy, It has not affected my stomach at all. I am on 10 drugs for MS and heart stuff. i am on Cellcept as a DMD for MS. I was worried about that and my stomach, but I'm fine. Again, sx vary from person to person.

Good luck you guys. It has improved my life in a multitude of ways.
-Susan

It only increased my fatigue and I work standing up doing sales all day. I stopped after about a week. My energy is more important than my leg strength (which wasn't bad anyway). I didn't get any other side effects though.

The neuro thought it might help me to do more, longer but it didn't.

Good luck to anyone that this helps.

Keep us posted on your progress on this RW. I am having increased problems with my legs.

I am paying more attention to some of the new meds on the market.

Cellcept is not a DMD, it is Chemo. From Drugs.com "CellCept lowers your body's immune system".

Hey Flygurl! We miss you hear, ya know!!

I'm going to do the month long trial of the med and then I will let you all know what's up.

So far I have this pain in my lower back and side, like my kidney is falling out, but that could be due to the fact that I haven't had a decent night's sleep for too long, and I slept outside in a tent over the weekend in the rainy weather and my double rising air bed kept getting squooshy cause it was COLD!

I have to actually get two 8 hour sleeps in a row before I say it's a kidney!