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Useful information about Ampyra

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    Useful information about Ampyra

    This new thread is to help you with information about Ampyra (dalfampridine), the oral drug designed to improve walking for people living with MS. Feel free to post your experiences or questions here!
    The official website
    The medication guide from the FDA

    Other helpful sites:
    Last edited by Seasha; 12-23-2019, 10:39 PM. Reason: deleted MS focus
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    One week down, 3 to go...

    Well, a week and a day and a half since I started Ampyra! I take 1 pill, twice a day, 12 hours apart. 7:30 is the lucky number for me.

    I started last week Tuesday night. Went through Wednesday no problem, then Thursday was terrible. I was bad nauseous in the morning, then I had a bad case of "D" when the side effect mentioned when you take it is "C" (Bathroom issues if that helps you understand) I talked to my neuro's nurse and she said it sounded more like a 24 bug than anything.

    The next day I woke up with a headache which can be a side effect. It was mild so I didn't medicate for it, just worked through it the best I could and haven't had any issues since.

    I'm so excited, hope in 3 more weeks it will start working well, it says about 4-6 weeks to get in your system well to see if it helps your walking and balance any.

    I do notice my legs acting funny some though. They seem heavy and I walk a little, I don't know, "off". It's not in a bad way though, it's almost like my legs are trying to get used to walking in a different way than I have been.

    I use a cane outside of the house. I notice the way I was walking before I got this feeling was more side to side, and now it seems my legs are trying to walk closer together, if that makes any sense. It's almost as if my legs are trying to remember the way I used to walk normally before I had issues. I'm at least staying positive and look at it as if they are trying to get back to where they were before the problem.

    Anyway, it was hard to find posts about Ampyra as there was never really a place where it fit since it's not a DMD although it is a SXT that A LOT of MS patients are on.

    It's hard because I am constantly trying to see if I notice anything and hoping I fall into the 33% it works well for, I'll even be happy to be in the 33% it works a little for too!

    I look forward and hope that some of you will come and post here now that there's a place and share your experiences, questions, and concerns

    See ya around!

    RIP Jenna's Beloved Momma
    Best MS Support System Ever
    7/42 - 12/12


      We finally got a space, pass it on! - Ampyra Update

      Me again ~ I see that people are having problems finding this spot and are posting in other places not knowing about this one as of yet. If you see someone, point them out this way.

      Well it's been 2 weeks, and I'm starting to notice differences. I walk faster but not for long yet. Still got another 2 - 4 weeks to see the final result. I can tell that if I'm showing signs already that I at least have made it to the "middle" group, but I'm still aiming higher for the top! Staying positive and noticing the changes keeps my hopes up. Not going to give up. Made it through the initial side effects not to downplay it now. It is made very clear it takes 4 - 6 weeks to get in your system, so I just have to remember to stay positive and most of all be patient.

      Let's see, when I first started my balance was off worse than usual, but I attributed it to the Ampyra trying to retrain my legs to walk "normal" and not so much side to side. Now it's getting better although when I walk and I have to change direction to go back, I have to take little steps and turn slowly.

      I was shocked that my neighbor saw me go out to the driveway to get the mail and commented that "you're speedy all of a sudden, if it wasn't for the cane I wouldn't of thought it was you!" I do walk faster through the house, haven't done a lot of walking outside though, but have plans to try and go out this weekend and see if I can last in a store longer than 15 minutes before my legs give up and lock up or go all "wonky."

      Cool thing happened the other day though. I went to the store for a quick minute and when I got back home, I shut the car off and got out and started walking towards the steps. After a few steps I realized... I had left the cane in the car! I just had got home and got out of the car and started walking in as if it was the most natural thing in the world. I went back and got the cane and used it though. But WOW it was a neat feeling and it makes me feel I am on the right track!

      I miss walking normal, but am glad to be able to walk at all even if it's for a short period of time. (very short) BUT I can tell something is happening inside my body. My brain is remembering how to walk correctly, and hopefully the signals will strengthen and bridge the gaps in the nerve connections to my legs. I can tell when it's near time to take the evening dose as my legs get heavy and stiff.

      Something is definitely happening. I'll keep you posted over the next few weeks and see how it's going. I have a doctor's appt at the end of the month and I hope to walk a little without the cane and show them how I'm feeling. Mostly I'm looking forward to even if it's not a normal gait, I can walk longer than 10 - 15 minutes before my legs give out.

      Hard to believe that 6 months or so ago I was in a wheelchair when I started the Gilenya. I was in the middle of a "flair" up, once it stabled itself, I haven't had one since! Go Gilenya I hope it keeps up and this is the medicine that keeps the flairs away. It has been so far, so there's no reason to believe otherwise. I'm hoping to beat my old score of 4 years without a flair when I was on Rebif before they changed me up and put me on Copaxone, I had a lot of flairs constantly that turned into a bad one that lasted 7 months. Everything came back though except my walking.

      They put me back on Rebif, but after being off of it for 7 months my body had built up a type of immunity to it. Now it's Gilenya and so far so good. My MS is more stable and so now my neuro wants to give the Ampyra a shot. I was nervous at first, but am so glad I did it and hope to see good results.

      Hope you're having luck with it and that I will too. I definitely think there's good things beyond the horizon up ahead!

      Take care and thanks for listening.

      RIP Jenna's Beloved Momma
      Best MS Support System Ever
      7/42 - 12/12


        1 Month Update

        I'm surprised with the Ampyra posts floating around that none have made it here yet now that there is a place for it

        Well Tuesday marked off my 1st month of Ampyra. I think I made it to the top as far as I can go. My neuro thinks I still can maybe gain more from it as he says it's usually 4-6 weeks to reach it's potential into how your body takes to it.

        So here's to another 2 weeks. Hope to continue to see improvement, but am happy even if I don't nonetheless. Today I went for a walk to our mailbox on the street and back to the door and then back to the mailbox and around the tree before getting back to the door.

        My DH held my hand, and let me tell you, his hand was a lot nicer than a cane. I went to the mail so far 2x without a cane but this was the first time he got to see me go even if he did hold my hand. It was nice to walk hand in hand.

        I went to the mall last week made it to the far end and back only stopping to sit 2 times for just a couple of minutes. I had my cane though. This weekend I'm hoping to talk DH into a trip around the mall holding hands.

        He danced with me the weekend before last and held me so I could close my eyes and not fall from my awful balance issues. Even they are starting to get better.

        I definitely recommend talking to your Neuro if you have walking issues about Ampyra. There's more than half a chance that you'll see some improvement. That's better than none, and not ever trying at all. I am blessed and thankful to of made it this far. I hope to be able to ditch the cane in a couple more weeks. If not, I'm still grateful.

        I remember being so afraid to try this because of the possible side effects, but between people and the support I got here at MSWorld I judged the benefit to outweigh the risk and am glad that I hunkered down and took the 1st pill (after staring at it for a half an hour lol)

        Well, I'll keep checking back and also update in a couple of weeks as well to see what % I made it to and if I'm stronger enough to not need the cane. I've got back most of the walk, now I just need the stamina to walk more than 15-20 minutes without my legs giving out on me.

        Take care and Pats fans, we are gonna make it to the AFC 6 years in a row and also be Superbowl Bound! *WOOHOO*
        RIP Jenna's Beloved Momma
        Best MS Support System Ever
        7/42 - 12/12



          I don't take Ampyra but I noticed your posts and just wanted to say, how wonderful! I'm so happy for you and hope you get to ditch the cane soon!!


            Thanks! I hope so too!

            Thank you for the kind words October I hope to ditch the cane too, but am pleased enough with how far I've made it so far that there's no complaints for me if I don't make it that far. We'll see in 2 more weeks! Speaking of, your month is in just a few more days, so have a great one!

            Stay strong fighting the MS fight!

            RIP Jenna's Beloved Momma
            Best MS Support System Ever
            7/42 - 12/12


              I started Ampyra about 6 weeks ago

              I started amprya about 6 weeks ago. I have had good luck with taking it. No side effects yet. I don't need a cane to walk.
              I noticed I was thinking better and didn't have to make sure my feet were doing what they were supposed to be doing. I see your from PA, I live in Juniata Co.

              I take large doses of Vit D'3,
              B 12,
              Apple cider vinegar,


                Hey that's great Glad it's helping!

                Yeah I'm in NEPA - I keep getting better everyday I take it. My 6 weeks will be up Tuesday I took the garbage to the street and back without the cane last night. Steps and everything I have to go to the DMV for a new license and am going to try and leave my cane in the car. Have it near just in case.

                I have been feeling great. I do however notice when it's about an hour or so before my next dose as my legs get a little more stiff and I don't walk as well. I am excited and try a little more everyday. I need to build up stamina and strength. I don't PT as it causes me flare ups, but I'm hoping that through the Ampyra I'll be able to start walking unassisted for longer periods of time.

                It's amazing the things I took for granted until I lost them and it's amazing now that I see I am getting them back. I get so excited when I do the simplest things like taking the garbage out! To be honest, I am a little nervous when I don't have the cane nearby. However, I have to try so I do a little more everyday. Biggest issue is not knowing how long I can go. I don't want to get stuck in the middle of the mall and have my legs lock up on me and no cane or place to sit.

                This weekend I plan on attempting a few things. Can't wait to see the neuro that put me on it and walk into his office without assistance. It's been a long haul that's for sure! Good luck with it too
                RIP Jenna's Beloved Momma
                Best MS Support System Ever
                7/42 - 12/12


                  Thanks for the detailed posts about your journey with Ampyra. I remember our chatting about it. It is so good to hear of your success.

                  I am nearing nine months on Ampyra now. I think I fall into the "middle" group, but every once in a while I walk so quickly and with grace for a short distance that I feel I am still making improvements.

                  The Ampyra has definitely increased my strength and endurance in many ways apart from the walking. So even though I still limp and use my tall cane and my rolling walker in situations that require them, I know I am getting around to more places.

                  I am especially gratified that I can walk with a narrower stance, not needing to swing my leg out or bob from side to side. That "cow" walk was just too demoralizing for words. I cannot actually go heel to toe except in the pool where the hydrostatic pressure helps my balance and allows me to practice the pattern I want, but when I catch a reflection of myself in a glass door, I see my posture and alignment are much better.

                  Keep the faith,
                  Stay lifted,
                  "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
-Henri Amiel


                    Latest Update and a Way To Go Mermaid!

                    Hahaha I read what you said about the "cow" walk and laughed out loud for real because that's the only way I could really walk before, just never looked at it from that point of view!! Thanks for the smile

                    Well, I said I was hoping to ditch the cane by October, and I have been caneless since Friday! I've done things, gone out to eat, gotten the mail, went to the mall by myself and left my cane in the car. As a matter of fact it's been there since Thursday night! I know where it is if I need it, but I am thinking I won't unless I'll be walking a long distance or standing for a long period of time. My stamina is increasing and so is my strength. Slow and steady wins the race, so I'm taking it one day and one step at a time to see.

                    I feel like it's still working as far as I seem to be able to do more each passing day. I think I made it to the top 33% it helped a lot. I mean I was in a wheelchair the beginning of this year. So even if I never gain the ability to spend a whole day at the mall walking around without leg issues, I know that so far I can go a good 30 minutes or more without assistance. I'm hoping by Christmas I'll of gained more strength and stamina to attempt making it through the entire mall. (My hubby wants me to, but to just leave the card at home LOL)

                    This weekend was great. Friday I did some errands, Saturday we went out to eat with friends. I didn't use a cane and it's the first time they had ever seen me without it. I got up at some point at the restaurant to use the washroom and on my way back to the table (which was a good ways from the washroom) they were clapping and smiling at me. I wanted to cry I was so overcome with happiness. It wasn't easy, there are a lot of ramps that the floor is uneven there and not flat the whole way through the restaurant. Ramps that go up and down are hard to walk on, but I think that's because of my balance. I'd rather attempt stairs. I did it though, and my DH never looked more proud as when I came back to the table.

                    Sunday I did something I haven't done in over a year and a half and that was bake I love to bake! I haven't been able to, because I cook from scratch and standing long periods of time locks my legs up badly after a short period maybe only 15 minutes. Well I baked cookies (We ate half the batch and gave the rest away, it's worth the extra pound I gained LOL) I did the whole kit and kaboodle, from mixing to measuring to baking and repeating the process. I felt great and had missed it so much. I do love to bake. I made Peanut Butter Hershey Hugs, they were good! I wish there was a way to share them with everyone here. I think it's the best cookie I ever have eaten because in the end, I was a little worn but I did it! Took about 2 hours to make, mostly of standing and rolling out balls of dough.

                    I am going to start cooking more again too. I've simplified the menu so much to be able to not have to stand long, now I can't wait to attempt Thanksgiving dinner for myself, my DH and his friend that is coming to PA to spend it with us. I hope I continue this trend of strength and stamina improvement so that I just might be able to pull a Turkey Day off!

                    I can still tell when it's getting close to dosing time. 12 hours fly by. My legs start to feel heavy and also stuffed with cotton (If that makes sense.) about an hour or so before I'm due for my next dose. I thank God every day for blessing me and I treat every day the best I can as if it was the last day I could walk. I want to make sure I remember if and when the time comes that I can't again, that I remember when I could walk and what I did last. It's something I used to take for granted, but now I see it as a precious gift. I hope to gain more strength and stamina that maybe I'll finally be able to start PT.

                    Before, even home PT would cause a mini flare! Thursday, I went to a Curves session with my neighbor and found a system that I can control myself and tried it and made it around the class once. I'm thinking of joining and doing my PT that way. It's not endurance walking or anything, it's low resistance weight and movement system that helps strengthen at a very low level. For now I hope to do the class just once around the circuit, and work my way up over time to do a full half hour which is 3 trips around the circuit. My neighbor and I were happy to see me do it once through and who knows maybe in time I can do 3. I am in no hurry whatsoever. Don't want to push, just let it happen naturally if it's meant to be.

                    My Neuro's are going to be proud. I see Neuro #1 in December and I hope to still be doing well and walk in to see him without a cane and give him a big hug! I already went to pick up a script and his nurse heard in the back that I was there without a cane and came out to see me because she was amazed at how I was doing. I got a big hug from her!

                    All my fears of trying the Ampyra, well, I'm glad I decided to try and get over them. I hope my story will get someone to talk to their Neuro and see if it's an option for them to take a chance and try. There's a 66% chance you will get some benefit from it, there's nothing to lose, I mean I already couldn't walk; and so much to gain. Don't let the side effects scare you off like they almost did me. It's just the pharm trying to cover their butts by making sure that every avenue has been covered by them. Your doctor will know if you're a candidate or not for it, and if it can help you, it's worth the try. It was for me and I have nothing but good thoughts and prayers to send for anyone who decides to learn more and give it a try if it's for them. Even if you're not into trying it, I'm still here fighting the fight with you

                    I know I talk a lot, but I wanted to share and see it in black and white that WOW that's me! I'll check back now and then and see if anyone has any questions or concerns that maybe if I know anything about I can help through what I've gone through since even before the first pill. We're all family here, we share a common bond. You have all been there for me when I've needed someone, I hope I can be there for you too

                    Take good care and keep fighting!
                    We might have MS but MS does NOT have us! We still have our spirit to hold on to and that is something it can only have if we let it. I say we don't let it and we fight!

                    See you around MSWorld

                    RIP Jenna's Beloved Momma
                    Best MS Support System Ever
                    7/42 - 12/12


                      Hi Everyone,

                      I am new to the forum, but I just faxed over the info to my neuro to get started on Ampyra. Like many of you, I also have issues with walking and am hopeful that the Amprya will help me. It is very encouraging to see that many of you have benefited from I will keep my fingers crossed!

                      Nice to meet all of you and will keep you updated once I get going with the Ampyra



                        Ampyra for SPMS?


                        So glad you are having success with Ampyra!

                        Are you RRMS?

                        I tried it a couple years ago when I was RRMS and taking Avonex. I didn't take Ampyra for long (maybe a couple days)I felt dizzy and "off" and got scared feeling that way while driving because of the seizure warning. I probably didn't give it a good enough chance.

                        Anyway, I am now SPMS and only take LDN. My walking is sooo slow and off balance and my legs are stiff. Does Ampyra help you with this?



                          Hi Lynn,

                          From what I have read it is potentially helpful for all types (categories) of MS.

                          Hope that helps




                            Hi Beth,

                            Thanks for the reply.

                            Good luck to you in your journey with Ampyra. Keep us posted.

                            I may look into trying it again...



                              Hi Beth ~ Hi Lynn Hi everybody!

                              Well, let's see... where to start...

                              I am RRMS, was dx'd in '08. Lynn, I know how you feel about the side effects, but it's worth it, at least it was for me. I put t off because I was nervous about it but then made a list of pros and cons of trying the Ampyra, and my list of pros far outweighed the cons. Really there was only one con, that was the seizure possible side effect. Pros were being able to walk, do things on my own without having to rely on others so much, and more. If you're scared, you have to find the strength to put it aside otherwise you'll work yourself into a tizzy and stress yourself out; which is not good for us MS'ers. I wish I'd of known about it earlier, but I believe things happen in their own time. When it's meant to be, you just know it. I hope if you do talk to your neuro and decide to try it that it works for you and you do get some benefit from it. All in due time Sure, I'd of liked to of been on it and not gone through the period when I needed a wheelchair, but I guess I had to wait until I was ready and willing to try.

                              It definitely does help with speed! If you're feeling slow, you'll notice it like I have and like MermaidSusan mentioned as well. I walk at a fast speed now. I actually have to slow myself down to make sure I keep a steady gait and don't get out of control. I am hoping it's still working and think it is as my strength is improving in my legs and my balance too. I used to get off balance just putting a shirt over my head! I do not walk well on ramps, especially down them. I lose balance easy. I'd think it'd be the other way around but, as long as there's something to hold onto, I opt for stairs.

                              I'm like Mermaid, still feel like I'm improving in slight ways. I hope to, but am happy wherever the cards may fall. I try to stay positive, and note every moment as I want to remember the good when/if the times turn bad.

                              Beth, welcome to the forums and MSWorld. It's really been a magical place for me to be honest. It's nice to be around people who truly understand and don't just nod and offer sympathy. There's many a shoulder to lean or cry on here as well as people to hug and jump for joy when your feeling joy too! You are never alone here

                              I missed a dose once and freaked out and called the specialty pharmacy that I get the Ampyra from and talked to a pharmacist. They were so nice! I was 99% sure I DID not take it, but didn't want to risk the 1% that I might of and double dose accidentally. I was afraid that by missing a dose I'd have to start over again and lose anything I had gained up until that point. They were understanding and said it's always better to skip and definitely don't take it if there's a chance you have and no, that I wasn't losing any ground I'd gained.

                              Ampyra isn't an official MS drug, but I'd bet that most people that do take it, the majority have MS. It's really been a blessing. I'll take as many days walking as I can squeeze out of it while I can

                              Hope y'all have a good day See y'all in this MS World we live in! (I love the word y'all if you can't tell heehe Yankee born and bred, Southern soul by the grace of God lol) *Does a little boot-scoot boogie line dance someday she hopes to do again once more* Dang I miss dancin'!

                              RIP Jenna's Beloved Momma
                              Best MS Support System Ever
                              7/42 - 12/12