ampyra

[vinnie1772]

Anyone have any 1st hand experience with this drug. My irlfriend just started on it today. the side-effects look bad. anyone have any idea how long it takes before there is a noticable improvement?

[vinnie1772]

Well, we're on day 3, taking Ampyra twice a day. So far no side effects, although i'm not sure how long it takes to build up in your system till a side effect would manifest... So i'll keep you updated as we notice things changing for better or worse.

Thanks

[Sarahsmom46]

I hope this works for your GF.

I have been on it for almost 4 months now, at 20mg, and it has been helpful.  I committed to taking it for one month and if I didn't notice much of a difference, I'd stop ordering it from the pharmacy.  I was skeptical about it even working so was very surprised that within a few weeks I saw that my walking speed and ease of movement had made real improvement.

I compare my improvement to walking on those moving walkways at the airport.  You can move more quickly and with more ease than those who are walking alongside you on ground level.  Hope that makes sense.  

Anyway, my plan is to stay on it until I do not see it helping anymore.  I have no side effects except maybe increase heartburn.  I would not agree to increasing the dose though.  I can imagine that the side effects would be more harsh and I'm not willing to keep taking it if that is the case.

Keep us posted on how she is doing and if she is experiencing any difference.  

-Julie

[Lulu54]

Vinnie, the one side effect I overlooked last night and explains why I am up and on the computer now, is the insomnia.  That does seem to bother me a bit - I'm waking about 4-5 am every day. The only thing I can attritube it to is the ampyra.  

I shared the list of side effects with someone a while back and had to laugh, because they are all things associated with having MS, so how would we know if it is the drug or the disease?

we're here for you and her - ask away!
L

[vinnie1772]

Thank LuLu,

I'll definatly let you know how she does, her neuro screened her and thinks it will help. The only thing that really concerned me was that relapse is a possibility, and in one of the testimonials i read, a lady started at 20mg, increased to 30, then to 40 and bam, replased.. So im thinking if he keeps her to a low maintenance dose she should do ok.  Keeping my fingers crossed, she's a wonderful girl, very patient and tolerant of me, as this is all new to me.  I'll keep you posted as to her progress,

Thanks for the support,
Vinnie

[Lulu54]

Hi Vinnie,
I have been on ampyra just short of one month - I'm thinking the side effects looked like the normal bunch of stuff, with hte exception of possibility of seizures . Her neuro should have screened for seizure history before prescribing this.

The verdict is out with me ... I think it makes a difference, but I also understand how much the placebo effect works for MS pateints, and maybe it's in my imagination.  

After I finish a month the plan is for me to go off of it and see what a difference that makes.  For the cost I want to be sure there is really something there for me.

There are only a few of us here using it right now, though their are others here who are on 4AP which is the compounded version.

keep us posted on how she does with it.....  Lulu