I guess more specifically I was hoping someone here had taken part in a clinical trial. As far as I can tell, there were two trials, and both stated improvement in walking. Was upper body strength also improved, or were test subjects only experiencing symptoms with lower body strength?
The FDA site has info. It said 35-43% of patients saw an improvement in their walking, but that the medication is not for everyone. The one patient they cited had used a similar drug acquired through a compounding pharmacy. The lady has SPMS.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Anyone have any experience using this? Especially interested in those with primary progressive MS. Thanks!
I have been on ampyra for amonth and 1/2---I do have more energy---and walk without an aid until one or two o'clock than I need a cane---I expected more---I also have a steroid blast ever two months which I see better results NO walking aids for three or four days than none in the AM until twoPM-----but just because U have MS doesn't mean U CAN'T have something else go wrong---just DX with arthristis in left knee----KEEP MOVING---pat
I have RRMS (less remitting as time goes by, but..) and I just wanted to share my experience so far with ampyra. Aside from the usual numbness and tingling etc, my primary symptom is leg weakness, it's gotten bad enough that I obtained a handicap placard for the car so on those days when it is at it's worst I can park close and hopefully make it through Costco or Walmart or wherever I'm going; a couple of times I walked in and was wheeled out. SO...
I just wanted to give background, I know many are far worse off than I. I obtained Ampyra a couple of months ago and I am stunned by the change in my walking ability. I know everyone is different, but so far this stuff is amazing. My balance is still lousy, but the weakness, on most days, is nearly GONE. Dosing is interesting, if I take a tablet after 6pm I'm awake until 2am with what I'll call 'electric thighs'. Doesn't hurt, but really keeps you awake. I'm adjusting dosage and time to alleviate that issue.
I hope this information helps somebody, I was nervous beginning this drug due to the main side effect (seizures), and I know data can be hard to come by sometimes...thumbs up for now
The Following User Says Thank You to Freestyle For This Useful Post: kozzleme (10-31-2010)
can we stay in touch I'm taking ampyra now in my 2nd month 2x a day I have been having trouble with left leg (wishy washy) at times I was late with last renewal and am on 1 aday what is ur doesage and did u ever use an aid to walk has ur tightness in ur legs gotten better lots of questions please stay in touch
I tried one dose per day, that did next to nothing, even 1.5 per day didn't seem to do the trick. I find 2 doses per day, as recommended, is the minimum for efficacy. I suspect even more might achieve greater results, but there is no way I would recommend that dosage given the chance of seizures.
I also had an issue with my first renewal and my anecdotal experience is that it takes at least a couple of weeks at FULL dosage for maximum benefit. Insomnia is the downside for me, but that seems to be fading (I take very early in morning then try to make sure my second dose of day is no later that 4pm or so, that seems to help).
Some days the weakness wins, but with the Ampyra those days are significantly fewer...I'll take it.
I'll try to keep y'all updated, time to go watch football...
It is available in the US. Ask your doctor. I've been taking 4ap (same thing) for 15 yrs & it definately helps. There are days that I genuinely forget to take it - then I start slurring my words & have an even harder time walking but then I realize that I didn't take the 4ap. So, it does help & it has for 15 yrs.