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anyone take ampyra?

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    anyone take ampyra?

    HI,

    so anyone take ampyra for ms? if so does it help with mobility and walking?

    neuro is putting me on it, because my walking isn't great, along with bacoflen for the spasticity.

    i tried for 3 years to avoid all these meds, yet in the end i'll be on all of them.

    not a fan of meds.
    Jen Dx'd 5/11
    "Live each day as if it were your last"

    #2
    I have been on it since july 2010. I cannot go without it, if I forget a dose I know it in about 2-3 hours when I can hardly walk, it has also helped with fatigue and heat tolerance but like all ms drugs it only works for 30% or so.
    Plan for the future, but not too hard; it’s not your decision anyway

    Comment


      #3
      Hi sunshine! I am one to also avoid meds unless necessary, but I really was excited to try Ampyra a few years back when my walking was severely effected.

      But, I was one of the unlucky % of people that it didn't help. I did feel increased energy, and was on it for several months, just hoping and hoping the walking would improve. Never did.

      I would try it and see if it helps you! I'd give anything to be able to walk better myself. You'll probably know in a short while if it is helping, according to what others say.

      Good luck to you
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        I'm approaching my 4th anniversary on Ampyra, and I'm in the 30% that it helps a little. However, it is well worth taking the two pills a day. I can really notice the difference if I don't take one dose. I agree that is helps with other areas, not just walking, and I would recommend you give it a try if you have insurance to bring the cost down to the $40 maximum co-pay. Accordia really helps with assistance if need be.

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          #5
          Hi Sunshine. I have been on ampyra for about 6 months and have found that it really helps. I still walk with a cane, but I can walk faster and longer which is a huge improvement. It has really helped with the fatigue too. Before ampyra, I would be dragging myself into the house after work and could barely make it through dinner! Although I am still tired at the end of the day, it is so much better. If I miss a dose, my body reminds me of just how good the ampyra is working! I think without it, I wouldn't be able to work full time even though I work in an office. Don't expect it to work instantly. It took a few weeks before I noticed a difference. My neuro was thrilled it worked for me. She was clapping when she timed my walking at my last appointment. I hate taking meds too, but I like walking and not feeling so tired and slow. I also take copaxone which is also working. Good luck to you!
          RRMS: Diagnosed July 2013
          Assistive Device: cane.
          Meds: Copaxone, Ampyra, Vitamin D

          Comment


            #6
            Hi sunshine

            I've been on Ampyra for I can't remember, 5 months maybe. I don't think it's helped very much. But I went off it for about 4 days, and I seemed to get a little worse, so maybe it helps a little? It's so hard to tell because some days or even clumps of days are better than others regardless of meds. Also, I have PPMS and it's progressing very quickly, so it's hard to tell how bad I would have been without it. But I really hope it helps you a lot--good luck!
            PPMS
            Dx 07/13

            Comment


              #7
              Hi sunshine

              I've been on ampyra for about two and a half years now. I definitely noticed a difference on how long I could work before the muscle aches and clumsiness got worse. Last few months have been worse for me but still feel I'm better than I would be without it. If I miss a dose because I'm busy at work my legs remind me to take it.

              It's definitely worth trying. It took a few weeks to feel the benefit so give it time.

              Good luck.

              Comment


                #8
                Cleobear. I'd love to know what hospital or where in Massachusetts your neurologist is based if you don't mind saying. I love the comment that he/she clapped for you and that they do timed walks to follow you. I'm from mass and have been feeling discouraged by my recent insurance required change of neurologists. I've been thinking of returning to my old neurologist since my new one hasn't been the best fit for me. Yours sounds like my previous one and I was hoping he/she might fit into my insurance.

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                  #9
                  I am really glad to see so many positive results w/this Rx! I was 1 of the few that it actually made my sxs worse I believe that yoga helps me more than anyhing else. Good Luck!
                  You never fail, until you stop trying__Albert Einstein

                  Comment


                    #10
                    Hey all, don't know if I should start a new thread or ask it through here but my nuero also just recently put me on ampyra if it did help you how long did it take for it to take effect? Because how "imagine" said I feel worse for since I have begun ampyra. I've been on it for 11 days now.

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                      #11
                      both I and my family noticed a difference within 2 days, my friends noticed the difference when they saw me a few days later, I will admit I have had better results than all the others I know who have tried it. friend went on 2 month trial and it made him worse. I would say give it 6 weeks if you cant tell a difference don't take them for 24 hrs and see if you notice a difference, if not it may just not work for you. I missed my night time dose beginning of the week and had to use WC until I got it back in my system 6 or 8 hours later.
                      Plan for the future, but not too hard; it’s not your decision anyway

                      Comment


                        #12
                        I am also in Massachusetts...and on Ampyra

                        I have been on Ampyra for several years. It helps with my walking and also gives me lots of energy!

                        It is very noticeable when I miss a dose.

                        I also do rituxan every six months and have been very lucky with all the chemo drugs I have done.
                        "Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

                        Currently on rituxan

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                          #13
                          I have been on ampyra for a little over two years. When I started, my neuro had me take it once a day for 2 weeks to make sure I tolerated it okay without side effects (seizures). Then I went to twice a day. It did take a few weeks to really notice a difference. From then on I definitely notice if I miss a dose or if I'm late taking one. It decreases the fatigue and muscle weakness/achiness and helps me get through my work shifts. Hope it helps you.

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                            #14
                            didn't do anything for me so I stopped taking it.

                            Comment


                              #15
                              I've been on it since 2009 and it seems to help, also PPMS so it becomes hard to tell but think it is helping. No side effects and using the mfg's copay so staying on it.

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