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Useful information about Ampyra

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  • tinytimsmom
    Is Ampyra right for me?

    Hi, friends,

    I have successfully been on Tysabri for ten and a half years now. I have been asked to get on Ampyra to help with my walking, continuing to stay on Tysabri. I have read the necessary brochures and websites regarding Ampyra. I am sure it is a case by case, but is there a timeline on how long is needed to stay on it? I am concerned about the long haul of taking the medicine and of course the cost. CVS Specialty Pharmacy currently has my prescription. Any feedback would be much appreciated.

    Thanx a lot!!

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  • chefalli414
    Ampyra issues help!

    Friends, I started Ampyra yesterday -5am first dose, had no issues all day other than a little back pain, I took my next dose at 5pm went to work and at 9pm, the bottom fell out!!!!! The numbness in my feet and lower legs went from 2 to a 100. I was tripping, falling, could barely drive myself home, balance was terrible. Horrible night-slept decent and woke up and my feet were better but they are always numb to an extent which is my "normal". I called Ampyra and they recorded my call as an severe adverse side affect and said my doc needed to make the decision if I should continue. My doc said give it a few days, them restart and take one dose a day for a bit then up it if I tolerate it. So discouraged ----- I was so hoping something would get easy for a change ! Any thoughts--

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  • Echo2099
    Dosage time too long?

    I know we can only take Ampyra every 12 hours, but I want to take it every six hours. I know I can't do that but Ampyra only lasts about 6 hours for me. And it is very obvious to me and friends when it starts to wear off.

    Anyone else find the med wears off so soon?

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  • Skidder
    Ampyra PPMS?

    Has anyone been prescribed Ampyra for PPMS? Outside the box? I'm supposed to get it soon and am curious if anyone else with PPMS has been prescribed the drug and had any success. Thanks in advance.

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  • crzynana
    Length of side effects

    On Ampyra 9 days. Have had dizziness so much haven't driven yet. Headache, nausea, tingling in extremities plus face after 2nd pill. Was short of breath one day but thought maybe because had done some cleaning tho have call in to dr. Anyone know typical length of side effects?

    Dx 1985 RRMS; Copaxone, Avonex, Rebif, Tecfidera but discontinued due to side effects; 40 days on Aubagio with hallelujah no side effects; foot drop for 2 years.

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  • Lynn1962
    First dose and I feel weird

    I took my first pill 6 hours ago and I feel strange. I was so excited to start Ampyra today but since I feel "off" I am wondering if I should only take 1 a day for a while instead of 2 a day.

    I have always been very sensitive to meds and I don't want to give up Ampyra yet but I feel extra dizzy and shaky today.

    I have read more good reviews than bad so I really want to keep trying but I don't like feeling this way.

    I tried Ampyra 3 years ago but gave up after a day or 2 because of the same feelings so I'm pretty sure it's my body reacting to the drug.

    Does any one have success with only taking 1 a day? I should call the Ampyra support line and ask them. I will keep posting,


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  • Baltoric
    It really Does Help

    I seem to have the same problem as most others - it does tend to wear off about an hour before the next dose. On a positive note, this could be considered a built-in "reminder" to take the next dose.


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  • nurcindy3

    Originally posted by JennacydeL View Post
    Hi everybody! Just giving you an update. First of all, Jaxun, I tell you once you get that feeling that you can walk in a store for more than 5 minutes, you'll be bouncing off the walls! It's amazing the things I took for granted before MS! Now a short trip to the mall is like a trip to someplace awesome like outer space!

    I'm still not able to walk for long periods of time. Right now I can go to the mall and visit a couple of stores though. I'd say I can walk steady, or stand and browse about 30-60 minutes before I feel a decline. However, it's also because it seems to happen around the time it's getting close to my next dose. I wish it was a once a day pill so I could have more stamina all day instead of wearing down about an hour, hour and a half before it's time for dose #2. I take mine at 7:30 am and 7:30 pm as in early because it gets my day off to a start once it gets in my system and in the evening around that time I can wait an hour or so for it to kick back in and have stamina to do evening activities.

    I watch the clock like a hawk! I notice that the effects start to wear down such as my stamina and my leg strength or locking up sensation about 6:00. So that's about an hour and a half before my dose that I start to notice it's thinning out and I'm wearing down.

    I still am so happy to be walking though. I am just in the process of learning my limits which is hard because there are so many outer factors. I can't wait to see neuro #2 on the 9th and actually stand up and walk to him when he enters the room as last time I saw him I was in a wheelchair. WOOHOO

    On a side note, I'll be finding out about my WBC and if I can start taking Vitamin D again and my liver enzymes since I've been on the Gilenya. I'm pretty nervous. Gilenya has been the drug for me and I don't want anything to affect my ability to stay on it. No flare ups for 7 months now!

    Anyway, just letting you know what's going on. It's nice to see I'm not the only one that took a few moments before the first dose. My neuro #1 thinks it's hilarious. He's ordered me not to read information that comes with meds he prescribes me because he knows I always find something to freak out about!

    Hope you all are getting ready for the upcoming winter holidays! Wishing you the best and I will check back after my visit with the doctor next month and update my posts. Y'all take care


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  • DorOMA
    Prescription for ampyra

    Had my six month appointment yesterday. No new lesions and a prescription for Ampyra! Bad news is my Neurologist is leaving. I am hoping that the Ampyra works for me and that I can find a new neurologist as good as the one I have now

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  • Seasha
    Wow Jenna! What a great testimonial story! So glad this has helped you and thanks for the encouragement to others. You should be the Ampyra poster child

    Thank you for sharing your story. I hope you're singing and dancing that line dance before long

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  • JennacydeL
    Daylight Savings Time and a howdy to the Ampyros, Ampyrettes, and Ampyra Curious!

    Well, it's been awhile (long) since I've been around. I pop into chat a little but y'all can blame it on the Ampyra I've been a busy bee since about Thanksgiving non-stop! It feels great to be back to cooking and spending time in the kitchen. When I start to realize I'm pushing it, I just grab a chair and do anything I can do while sitting.

    I don't seem to of reached a plateau. Everyday it seems there's more to do... and I can do it! I still wear down around dose time, but get back on track after a short rest. I am at a point where I leave the house or the car and don't even think about my cane. I keep it near in case, but my brain has worked it's way out of (or maybe into) a "cog fog." I seem to take off to do something and am halfway to the car before I realize I don't have my cane.

    If you have a chance to try it, go for it! You've nothing to lose and everything to gain! If it doesn't work for you, it's just another battle scar in the battle against MS and you can proudly say you gave it your all!

    Oh, the specialty pharm called to set up delivery and as always they asked the same questions with the last being if I had a ? for the pharmacist. I did this time. It was about Daylight Savings time and adding an hour to my day, how should I proceed with this medicine in particular. No changes with my other meds, but this is so tailored to be 12 hours apart like clockwork how should I take it. He was glad I asked because right now I take it a 7:30 am and 7:30 pm (It'd of been 7 if I wouldn't of stared at the first pill for a half hour before I started taking it lol) Anyway, he said that I should take it an hour later, so at 8:30. He said having more than the morning and evening pill in a 24 hour period increases your chances of seizures. And taking it at 7:30 would count as a 3rd pill that day. So I was glad to of asked, and if you're unsure ask your neuro or pharm (specialty is best, reg pharms aren't big on Ampyra education it seems) I'll actually be taking it an hour and a half later since I can take it with my Gilenya at 9 So no more getting up at 7:30 then going back to sleep for an hour and a half just to get up for more meds! He said a half hour later would be okay, so instead of an hour later I'll be taking it the first day (Sunday) an hour and a half later than I do now.

    Hard to believe this year is flying by already! Congrats to all the new Ampyra people and learn more to those of you who are curious because it might just be what you need to get your feet moving again. My goal is to be able to do my favorite line dance in a country club again someday before this MS tries harder to bring me down. I'm doing my best to not let that happen. As Reba sings, "I ain't goin' out like that!" I wanna be the one singing "Everybody here comes the life of the party!"

    Y'all take good care and hope to see you around! LOL @ all who were scared at first like me, it feels good to know you're not alone. At MSWorld we never are alone, there's always someone who's been through what we're going through! I love this place and I love all y'all ~ We're SURVIVORS! We're fighters! My momma used to tell me all the pock marks and red marks, bruises and dents on my body from taking shots were my battle scars!! I loved her for that, I'm hoping I'm doing proud by her. I wish... well, you know, it's all good. Y'all were there for me then. It was the stress and grieving that put me in a wheelchair, and here I am today walking! I tried. You can always try, at least you can say you did That's a good feeling too!

    L8r G8rz {{{{MSWorld}}}} Hugs to y'all!


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  • RColeman

    I can tell when it starts to wear off. About 1.5 hours before the next dose there is a marked difference in my ability to walk.

    Last night I made the mistake of taking a rather warm bath (I know...not the smartest thing to do) compounded by taking the bath too close to the next dosing time. Needless to say my sons had to help me get from the bathroom to my chair.

    My sons can tell when it is getting close to the next dose. Now they ask if its time to do so if I'm struggling.

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  • Jaxun

    RColeman - that's fantastic news! The joy at doing something we once took for granted is quite the feeling.

    I've been on Fampyra (that's what we call it here) for almost 9 weeks, and I don't notice any side effects anymore. I also don't notice any changes soon before my next dose is due, like a lot of other people. I think I reached a plateau at around 6 weeks as I don't see any new improvements anymore. I was able to get my walking speed up to 2.4 mph for a couple of minutes but in general I don't think I'm any better than I was at that point.

    Of course with the holidays I've been pretty busy and it's affected my time at the gym as well as the increase in activities at home, so I'm sure that's taking its toll. Two Christmases done and only two more to go (blended families and Ukrainian Christmas dinner) - what a busy December and January! Sometimes I'm not sure if I should continue this med or not, but then I read my last post and I get all excited again for the improvements I have seen since I started. And knowing it's helping others keeps me thinking positive thoughts. So we're gonna keep on truckin' as long as we can

    Happy New Year, everyone!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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  • RColeman

    I walked through Meijers and actually did some looking around a few days ago. It was great. Thought it was because it was just a good day for me.

    Yesterday afternoon two of my dearest friends "kidnapped" me and took me out of town for a girls day out.

    We went to the mall. That is something I have not done in years. They offered to get me a wheelchair to zip me through (although I think they just wanted to race in wheelchairs because they are that crazy!) I declined.

    I walked through the mall......I could not believe it. I took a few stops on a bench while they stopped and shopped in a clothing store. We got pedicures. We had dinner.

    My left leg only had trouble once...because I was trying to move to fast instead of at a steady rate.

    I felt exhilarated! I woke up this morning and feel fantastic!
    My next goal is to walk into town in the spring...after the snow and ice is cleared...

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  • msinvincibles

    I'm an early adapter! I've been on Ampyra for 4.5 years.
    Although I was diagnosed 11 years ago, I've never had problems with walking...

    Wish there was a tried and true Ampyra copy cat that helped with cognition...Aricep is available for Alzheimer's but it has also been prescribed for MS. Haven't tried that yet!


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