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    Fampyra / Ampyra

    Hi,

    I am looking to give Fampyra a try (I think it's the same thing as Ampyra in the US). I'm just looking to hear what others have experienced from taking it. Thanks!

    #2
    I wanted to try it but Fampyra is pretty pricey (about $500 without insurance, my supplementary insurance only covered 80%) so I opted for the predecessor drug 4-aminopyridine from a compounding pharmacy ($50 without insurance). So far it helps a little with fatigue and movement.

    I also posted a question here that might interest you:

    http://www.msworld.org/forum/showthread.php?t=128664

    Comment


      #3
      Ampyra

      Hi Positive, I tried it about 1 1/2 ago for approximately 3 months. Nothing. Did have any improvement in my walking (which is why I was taking it). My neurologist told me that it helps for approximately 30% of those who take it, and you'd certainly "know" within three months.

      I hope it works for you!

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        #4
        Thanks for the link misslux. And thanks DebbieB. Interesting that it only works for 30% of people. I wonder why that is.

        Comment


          #5
          I've been on Ampyra for 3.5 years. When I first started, I could tell a real difference. However, as time went on, my walking continued on a downward spiral, and I began to wonder if it was worth it. I tried going several days without, and wow, what a difference! I'm in the middle 30%, but it is worth it. I recently watched a podcast that said even with walking getting worse, Ampyra was still worthwhile. It helps with balance and aids in walking with a rollator. Since it only costs me $40 a month, I'll continue....

          Comment


            #6
            Uh....wow!

            I started yesterday. I know it's supposed to take a few weeks to work, but I felt the difference right away. The stiffness in my legs seems to have mostly vanished and I can walk almost normally. Not quite, but almost. Maybe I can kiss the cane goodbye soon?

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              #7
              I tried Ampyra but had a lot of bladder and legs spasms. The leg spasms were mostly at night but bladder spasms were during the day which was awful. I went off the Ampyra but really wished I was able to take it for the walking but couldn't deal with the the spastisity.
              I have an appointment with Neuro next month. Will put it on my list of things to talk to him about.

              Comment


                #8
                Hold onto that cane, Positive MS. I did have an initial positive response, but it leveled out. I continue to take Ampyra even though my walking continues to go downhill because I still think it's helping, and it only costs me $40 a month. I figure it's cheap insurance.

                That said, you may be one of the fortunate 30% that have a strong positive response to Ampyra. I certainly hope your positive response continues, but definitely give it some time.

                Comment


                  #9
                  Too true

                  You're right, cats, I am not flinging my cane away just yet, although it is a big dream of mine I dream of flinging it off a cliff into the ocean, although I'd never do that and pollute our oceans. We also have no cliffs overlooking our ocean here, lol.


                  I must say though, It's been a week today, and my balance is remarkably better.

                  I also walked down to the street corner yesterday without my cane, and I haven't done that for a year and a half now.

                  I'm not saying it's a miracle drug, but I feel so much more like I did before my MS got bad a few years ago.

                  Fingers crossed.

                  Comment


                    #10
                    My husband started taking Ampyra when it first came out. He says it really helped with his walking at first. He doesn't walk very well at all anymore but who knows how much worse it would be without Ampyra and he doesn't want to stop taking it to find out.

                    Ampyra did help with the cost. If you find it to expensive, call them and ask for any help they can give. We're on SS and find that Tysabri and Ampyra both offered help when asked.

                    Sure hope the Amprya will work well for you.
                    Husband Dx'd in 2006. Currently on Tysabri, Gabapentin, Ampyra, Baclofen..

                    Comment


                      #11
                      Thanks for the tips, Duckfan. I just got a notice that my insurance will cover it after the one month free trial is over.

                      I have a question. For how long did your husband notice an improvement before it went downhill?

                      Comment


                        #12
                        5 weeks

                        I just finished week 5. I love this med. I can now walk without my cane!

                        Comment


                          #13
                          I've been on Ampyra for 3 weeks now, and haven't noticed anything at all, good or bad. Starting to get discouraged as I've read about a lot of people here who saw almost immediate improvement. Should I stifle that pessimistic voice in my head, and still hold out hope, or is it time to accept a defeat?
                          PPMS
                          Dx 07/13

                          Comment


                            #14
                            Well J-Bo, of course I am not a doc, but here is my experience. I did noticed some differences right away, but the real leap in improvement came in week 5. I hope this gives you some hope.

                            The other thing that may have helped was that I pushed myself to practice walking every day. Carefully, because a lot of people do have falls with Fampyra for some reason. I walked around the block every second day or so, and did a bit more distance each time. It was tiring! It was also safe because there were huge snowbanks on each side of me so a fall would have been cushioned.

                            I say it MAY have helped because I have never understood this disease at all.

                            I know not everyone responds. I hope it does work for you!

                            Comment


                              #15
                              Originally posted by PositiveMS View Post
                              Thanks for the tips, Duckfan. I just got a notice that my insurance will cover it after the one month free trial is over.

                              I have a question. For how long did your husband notice an improvement before it went downhill?
                              Update on my husband. We had a problem, a mistake on Ampyra's staff, to get help with the cost. Consequently, my husband has been out of Ampyra for about a week and he sure is noticing a difference. His foot drop is so much worse and he said his weak left arm seems worse too. It will be interesting to see how a new dose of Ampyra will help. He should get the medicine this week.
                              Husband Dx'd in 2006. Currently on Tysabri, Gabapentin, Ampyra, Baclofen..

                              Comment

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