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QuestionsALot 01-22-2010 07:27 PM

Ampyra
 
Anyone have any experience using this? Especially interested in those with primary progressive MS. Thanks!

MSNik 01-23-2010 05:05 AM

Re: Ampyra
 
i dont believe its available in the US yet...target release date was supposed to be March 2010; however I could be wrong. Maybe it came out under a different name?
Nikki

QuestionsALot 01-23-2010 11:10 AM

Re: Ampyra
 
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?

MSJayhawk 01-23-2010 05:25 PM

Re: Ampyra
 
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. :angel:

lynnv70 02-27-2010 11:28 AM

Re: Ampyra
 
I'm on the compound (Aminopyridine-4) and it does help walking stamina some. Ampyra is 4-aminopyridine, similar if not exactly the same.

kozzleme 10-21-2010 06:44 AM

Re: Ampyra
 
[QUOTE=QuestionsALot;4169123]Anyone have any experience using this? Especially interested in those with primary progressive MS. Thanks![/QUOTE]
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

Freestyle 10-24-2010 08:00 AM

Re: Ampyra
 
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:cool:

kozzleme 10-31-2010 05:31 AM

Re: Ampyra
 
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

Freestyle 10-31-2010 08:34 AM

Re: Ampyra
 
Kozzle

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...:p

glowfo 11-23-2010 05:21 PM

Re: Ampyra
 
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.

Freestyle 11-23-2010 07:04 PM

Re: Ampyra
 
Update:

Still works very well, walking issues return very quickly when miss a couple of doses and can still keep me awake. Overall two thumbs up, the mobility benefit Far outweighs downsides.

kozzleme 11-23-2010 07:59 PM

Re: Ampyra
 
[QUOTE=Freestyle;4629105]Update:

Still works very well, walking issues return very quickly when miss a couple of doses and can still keep me awake. Overall two thumbs up, the mobility benefit Far outweighs downsides.[/QUOTE]

kozzleme 11-23-2010 08:03 PM

Re: Ampyra
 
thanks I am finding the same if I miss adose it takes a week or so before I get better---I did WAL MART and PRICE CHOPPER in one day I'm very pleased
thanks pat


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