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Fampyra / Ampyra

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    #31
    Positive ms. I feel very fortunate that I have made my way back from wheelchair two and a half years ago to working 12 hour shifts again. Those shifts are not easy and my legs are often heavy and clumsy but as long as I can keep moving I have to work to support my family. My doctor doesn't want me working but says it's my decision. He says my MS won't get worse if I overdo but I will be very fatigued and my legs may feel worse. He's right about that. My days off I crash and recover before my next shift. I try to separate my days too. It's definitely getting harder all the time. But. Keep moving is my motto. As long as I can

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      #32
      I started on fampyra 18 months ago and found it made a huge difference in my ability to manage. Changed to the compounded version after 4 months (the cost was prohibitive here in Australia). The result was the same. I did go off it to test, but I noticed a huge difference in my walking, balance and cognitive function. Like you, I have also increased the walking (although I use walking poles for exercise). It is certainly not a magic wand, but taking the
      4 -aminopyridine has really improved my functioning and lifestyle. Hope it continues to work for you

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        #33
        I gave Ampyra the good old "college try"... it didn't help me. It did some things to me that took me by surprise though. It made it easier for me to make it through the day without having to nap. That was a huge "reward". What it also did things for me that weren't cool.... it made me drop my inhibitions. I'm not sure if that's quite the right word. You decide: I like to have a drink of wine before dinner; on Ampyra, I wanted a LOT more that one. To the point that I was stressing (niiiice) about becoming an alcoholic. I stopped caring what other people thought of what I had to say and pretty much lost my "filter." I ate like a starving person. I didn't even realize how much I was eating until I couldn't zip my jeans. Therefore I stressed about that, again, niiiice. I was on it for about 6 months and gained 50lbs.

        Oh, and the depression... hokey fright I was SO unhappy and MEAN. I would argue with anyone who blinked. Ugh, I didn't like ME on Ampyra.

        Within one week of getting off Ampyra, I totally had myself under control again. But needed a nap. lol

        As it turns out, my MS issues aren't so much gait related as they're more on the cognitive side. We're working on that with Namenda and Aubagio. So far, SO GOOD!

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          #34
          I guess it's been about 6- 7 weeks now for me, and still no noticeable effect. I suppose I should at least finish the supply since it's not causing any side effects as far as I can tell. But I think it might be time to accept that this isn't the magic pill for me. Judging from the timeframes that you all are talking about, it seems like I must be one of the 30% who get no benefit.

          Well, I figure, if they can figure out why it works, that knowledge might help others (maybe?)
          PPMS
          Dx 07/13

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            #35
            crossing my fingers and toes!

            I have been approved for Ampyra and should receive the drug sometime next week. I'm hopeful it will help, but realistic.

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              #36
              Got my Ampyra

              I received my Ampyra today. I see my surgeon, (I have a spinal cord injury) tomorrow and will wait until tomorrow evening for my 1st dose.

              I pray for some help..

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                #37
                Good luck golfore! I hope it helps.

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                  #38
                  I B on fire

                  I took 2 doses, 12 hours apart.

                  My hands and feet, that burn most of the time, got to be un-bare able. Also, I feel lousy!!

                  I'll try again in a few days...

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                    #39
                    Start with one dose for a week, then add the second dose. See if that helps.

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                      #40
                      I had to start slowly too. One pill a day for first three weeks then up to twice a day. Lately I've been having more numbness and pins and needles in my right leg. The ampyra feels like it's leveling off a bit not quite as helpful. Don't know what this means.

                      Are things worse or are meds not helping as much for some other reason? Who knows? I don't want to skip doses to see and have worse days. Hard enough lately to get through my days. So tired lately.

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                        #41
                        Thanks for the advise. I felt really lousy,,,,

                        Gonna try one tonight.

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                          #42
                          Approved , ?but a little afraid...

                          So pleased to be approved for Ampyra and especially pleased to be approved for assistance program, but now that the pills have been shipped, I'm getting nervous. Mostly concerned about possible side effect of seizures and i don't seem to be able to find any information about just how many people have had seizures. I've had the lab tests for kidney function & its Ok and I've never had a seizure
                          before. I do take Neurontin 300 mg 3X day for nerve pain and I also take Tegretol 200mg 2X day for trigeminal neuralgia, which are actually seizure medications....So think I should be fine. Glad to hear some positive feedback from some of you who have been taking Ampyra. I think its worth a try with SPMS & issues with walking with rollater & falls. Anybody else nervous when you first started?

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                            #43
                            Yes, I was nervous for the first week, and I thought little strange sensations might be a seizure. Now it's been months and I never ever think about seizures. I just take it twice a day and love it.

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