paradoxical dalfampridine/Ampyra effects?

[erash]

so I took my first doses yesterday, felt like I was moving faster, my balance was significantly affected but I slept really well 👍 and then today, I was very lethargic and my balance and spasticity were horrible. (Not likely a relapse because I haven’t had a relapse x the 1980s and after skipping 1 dose I’m already doing better).

too soon to judge but I’m going to stop Ampyra for @ 1 week, and then retry.

I know not everyone responds to Ampyra but I wondered if anyone else had the opposite effect, and had severe lethargy?

Thanks! 🙂

[Sandydemop]

thanks erash for sharing your experience. i hope it works out for you.

[erash in reply to Sandydemop]

thanks sandydemop1

[Morllyn]

I hope it works for you.❤️

[twooldcrows]

have not use it but i hope you keep having some great days to continue...

[Kenu]

I didn’t have any side effects but I also did not have any improvement either. Hope this works for you 🙏👍🏼🤗

[whwiechm]

I've been taking Ampyra/Dalfampridine for about 6 years now. I have noticed no side effects, but I'm not sure that I have seen any improvement in my condition, either. I'm sort of wondering if I should discontinue taking it, but wondering if that will cause a relapse.

[Frances_B in reply to whwiechm]

Stopping Ampyra won't and can't cause a relapse because it has nothing to do with treating MS or preventing relapses. You may find that your mobility and some other movements are affected because if it is doing anything for you then they are the aspects of your MS which it helps with - by improving the transmission of signals sent via damaged neurons.

[erash]

I have not heard anything about it causing relapse if you stop it, but if it is working, you would definitely know that there is increased symptoms once you stop it

[Frances_B]

Go back to basics and re-check the side effects list - balance issues are a common side effect.

rxlist.com/ampyra-side-effe...

It is not sensible to stop/start/stop/start/stop/start it - unless the side effects area really bad you need to take it consistently in order to find out if it will work for you. Often the common side effects of any drug only annoy people for a relatively short time while their body adjusts to a new med. If you do the stop/start thing then you will never find out if the side effects would diminish for you.

[erash in reply to Frances_B]

Thank you. I had read about increased spasticity and balance as a potential side effects, but the severe lethargy where I wanted to get back in bed and muscle fatigue surprised me. I agree three pills are not enough to judge effect or side effects, which is why I am planning to try it again once I recover.

[Goldilockssearching]

i’ve never taken it for speed. I was prescribed it because of my ataxia so my walking was kind of wonky but I absolutely notice a difference now if I don’t take it as I’ve said before the generic version absolutely does not work for me. When I started taking it five years ago, the drug company gave me two months free so my neurologist had me try the full two months before I actually made a determination. Maybe you may want to stick it out for a bit before you decide either way?

[erash in reply to Goldilockssearching]

I’ll retry but will have to wait til weekend when if I need to crawl back into bed, I can. That kind of lethargy is definitely not my norm.

[Goldilockssearching in reply to erash]

hmmm I think it helps my energy because I’m not putting forth as much effort. Is there something else that may be making you so tired?

Muscle relaxers did that to me but not the Ampyra

[erash in reply to Goldilockssearching]

not that I can think of and stopping the doses —> improvement🤷🏻‍♀️

[Neworleanslady]

not me for sure

[KipAngCan]

I’ve been taking Ampyra for more than a year and I didn’t think it was helping until I tried stopping. I felt very shaky and was definitely moving slower. I have intermittent insomnia and I do nap occasionally but I’ve never felt lethargic. I hope you do get some positive out of it but it doesn’t work for everyone. 🤞🏼

[Allen5280]

I had serious complications with 0 result while I was on Amyra. It was the first MS med I started even before the approval for my first dmt, gilenya. Which I also could not tolerate and still have the scars from the sores all over my face and neck. My beard never fully recovered from gilenya

[mrsmike9]

Oh dear! I hope it gets better or you find something better!

[Tazmanian]

I didn't have any side effects hope it works out

[carolek572 CommunityAmbassador]

I never noticed any improvements in my walking so I discontinued its use,  erash . You are wise to stop and try again to determine if it is good for you. Let us know what happens. Keep Smiling!

[pmbevac]

Lat to the party - but I've ben on Ampyra for 6+ years and I definitely notice a difference when I'm off it - less mobile, tired faster & most all symptoms are slightly worse.