???s @ dalfampridine/Ampyra

[erash]

saw Neuro yesterday. She’s prescribing Ampyra. I’m hopeful 🤞 but wondered what others experiences were? What benefits, side effects? Insomnia?

Thanks! 😊

[Sandydemop]

hi erash i love my Ampyra! it helps with walking and even with my hand. It takes about an hour for it to kick in for me. you have to be careful to take it 12 hours apart to avoid seizures. i have taken it after 11 hours without a problem but the doc says if i have a seizure she can't prescribe it anymore. It makes a BIG difference for me.

[leking1]

Hi erash. I do hope it helps. My Neuro prescribed it for me a few years ago, hoping it would help my walking. I had no side effects, good or bad, and I probably took the Ampyra for 8 -10 months, hoping for improvement. Honestly, I don't think my body responded at all to the meds. There were no changes at all. Good Luck! I hope you have a great response .

[starlight5]

It didn't work for me. It can increase your risk of uti.

Hope you see improvement 🤞

[Kenu]

Hopefully you have good results 🙏 I didn’t have any side effects but it did not work for me. 👍🏼😉

[Frances_B]

Only 40% of the people who try it get benefit from it - if you are one of them you will know within 2 to 4 weeks - if no benefits apparent after that you may as well give up on it because it's not a med that you have to be patient with and wait for it to do it's stuff. Absolutely must stick to the taking doses 12 hours apart or seizures risk increases - and be even more careful if you try to save money by using a compounded version which is not slow release. I was not one of the 40% for whom it worked and in the seven weeks I was on it it made me incredibly constipated - but you'll never know if you don't give it a go.

[Sandydemop in reply to Frances_B]

hi Frances, interesting about the constipation. i have that but i thought it was because i don't drink enough water. Mine may not be related because it is just recent and i've been on Ampyra for years. i do recommend trying it because it is so helpful for me. sorry it hasn't worked for others.

[erash in reply to Frances_B]

constipation is a lifetime issue for me (finally controlled with Linzess). I will give med a try but if constipation or insomnia side effects are bad or persist, this med better make me be able to run again before I’d choose to continue 🧐

Thank you for sharing your knowledge and experience

[ahrogers in reply to erash]

I am glad you asked this question I have been thinking about trying it too. Good to know if no improvement in a month to stop and not take sooner than every 12 hours.

[bxrmom]

Have never tried the med but good luck to you. Keep us updated when you can. Good luck erash

[Amore55]

I hope you have good results with this. Have you decided on a family reunion location yet? Have you considered Hilton Head? It’s lovely there and it’s cool with the ocean breeze. I wish I knew how far away from Florida you are thinking, or if you want to stay in Florida.

[erash in reply to Amore55]

I’m in Fla 🤣

Brothers are in NC, we’ll be there

Maybe cooler 🤞a little, anyway

[mrsmike]

I used Ampyra for about 5 years and then started using a compounded version for the last 5 years. Switched to compounded version due to finances. It helps with my walking and I have had no side effects from it. Good luck. Let us know how it works for you.

[erash in reply to mrsmike]

Good to know. My neuro sent Rx to the Mark Cubin prescription service. Will cost $22/30 days. I'm ok with that for now.

[mrsmike in reply to erash]

That's a great deal. I pay $150/90 day supply from the compounder.

[mrsmike in reply to mrsmike]

I'm interested. Your neuro sent Rx to Cuban prescription service and it's that reasonable? No hidden costs? I have to give some thought to switching over. Thanks for the info.

[erash in reply to mrsmike]

only added cost is $5 shipping

Could u get ur prescription thru Cuban? Mark Cuban’s Cost Plus prescription service

[mrsmike in reply to erash]

I actually just renewed my Rx for 90 days. When I need my next refill I'll give it a try. Thanks.

[Elizt3]

I read somewhere that this med might help with heat sensitivity. Has anyone heard that? Boy, would I jump for some kind of remedy for that?

[TDonahue58 in reply to Elizt3]

Maybe check out a Cooling Vest, I use on the hotter, more humid days during the summer when using my scooter outside.

[Goldilockssearching in reply to Elizt3]

nope. Not in my experience the heat still kills me.

[Petdog in reply to Elizt3]

I use it and helps with walking and my spasticity but doesn't do anything for my heat sensitivity. cooking vests work well

[erash]

since heat slows down nerve conduction, and this medication improves conductivity he it makes sense that it would be beneficial

[Sunnyds]

I’ve been taking Ampyra for well over 10 years and it works great for me. I notice my walking suffers if I miss a dose. No side effects. Mark Cuban pharmacy is definitely the way to go for this medication! Ask for a 90 day prescription. Good luck, I hope it works for you, too!

[Hest19]

Good luck with the Amprya; I’ve never taken it but after looking it up apparently it does work for some people! I take magnesium citrate every day to avoid constipation; Thorne Citramate is the brand I’m taking now (3 caps daily) but they have plenty of good ones. I also drink lots of water which I know helps. I wish you the best! After a huge abdominal surgery Oct 21, they had me take 1 stool softener with every meal (Docusate Sodium 100 mg). That worked well and kept me balanced! I had no idea of how disabling constipation could be until I had to deal with it myself. Sending hugs!

[erash in reply to Hest19]

I also do all those things u mentioned

[TDonahue58]

Hi, I've taken Ampyra for a couple three years years, can't say that it made a difference tho. I can say that exercising/ stretching my feet/ legs and core have certainly made a difference in my foot drop. Check out "The Missing Link", Dr. Gretchen Hawley. I follow her on social media and her podcasts.

[Frances_B]

For all those who have taken it for some time but are not sure if it has worked for them or not - the only way to find out is to stop taking it fora few days or a week and you will then know. If stopping it shows that it's not giving you any benefits then don't waste money continuing to take it, but more importantly, stop because the risk of seizures does not decrease just because someone's been taking it for ages - a seizure can happen at any time with it. While they are a very rare side effect they can be a serious and damaging one.

Here's a couple of pretty comprehensive articles on the drug.

my.clevelandclinic.org/depa...

guildlink.com.au/gc/ws/bd/r...

(seizures and the requirement to stick strictly to the dosing schedule are on page 2)

[erash in reply to Frances_B]

thank you

[mcknighm]

Good luck with Ampyra. It didn’t do anything for me.

[Goldilockssearching]

I’ve been on it for years huge difference generic did not work for me at all so I need to get the brand-name. No side effects. Only issue I have is with the insurance approving it every single year. I shouldn’t say approving it that’s not correct they do approve it but not correctly 😂

they always end up fixing it but it’s a frustrating 2 month long process!

[sashaming1]

Didn't do much for me. Stopped taking it when the company said to stop taking if you've had seizures.

[KipAngCan]

I’ve been taking it for over a year now. I didn’t think it was helping so I tried stopping and discovered that it is in fact doing something. I had a go around with the insurance company when it was time to reapprove. They only wanted to pay for the generic and that had too many side effects. After months of fighting, they finally approved the brand name. I get it through a specialty pharmacy and have copay assistance so it only costs $30/90 days. I was getting the generic through GoodRX and it was $64/30 days. I’m very militant about the 12 hours. I have alarms set and multiple bottles at places in my house where I usually am when I take it. I’ve only missed a dose once or twice and knew immediately that there was an issue. I’ve read that it doesn’t work for everyone so good luck!!

[Poms62]

I've been taking since right after diagnosis in 2017 & it does help.

[Neworleanslady]

i love ampyra/dalfampridine! Mine wears off after 10 hours, so i pay attention to what time i take it since can only take it q 12 hours. Helps me with walking

[Neworleanslady]

i use the mark cuban cost plus pharmacy too

[D-Lola in reply to Neworleanslady]

Never tried going through Mark Cuban. Thank you!

[Neworleanslady in reply to D-Lola]

my doctor recommended it and took care of ordering it 3 months worth and everything!

[Tazmanian]

Been taking it for years started with ampyra then switched to dalfampridine because of insurance I haven't had any problems seems to be working fine good luck

[Mollyabigail]

Hopefully, you will be in that percentage that Ampyra helps, Erash! It did not help me, plus my medical insurance would not cover it. No side effects, though. Fingers crossed for you!

[erash]

thanks everyone for your insights and experiences with Ampyra 🤗

[twooldcrows]

i have never used but if it works for you ...great ...love and happiness...

[Lhallgrigsby]

Been on Ampyra for about 9 years. Had great results, it will put pep in your step. The bottom line is everything you do you will do it better.

[mrsmike9]

Good luck! Let us know how you do.

[tadpole60]

I take it. But I have insomnia. But I have had insomnia for 30 years. I was prescribed medical marijuana a couple of years ago and it helps me with that.

[gardener28]

I've been on dalfampridine for about 2.5 years. I'm honestly not sure it's doing anything but continue to take it because my insurance covers 98% of the cost and I have no side effects. I also have a crap gap before my next infusion and wonder if it helps me more during the gap. I like the suggestion that someone had, to stop it for a few days and see what happens. Good to know that didn't cause issues.

[cljones]

I have been taking it for about 9 years. I have had no side effects. I think it does help. I have had assistance to help with copays. Now the insurance I have and the specialty pharmacy I use it's 49.00 for a 90 day supply. That's doable.

[D-Lola]

I get mine compounded bc my insurance doesn't cover it now but, in one form or another, it has been a hugely positive med for me to take.My left leg no longer drags behind the rest of me. I make much less sound now. Can't imagine my current life without it. I have had NO negative side effects. Best wishes to you.