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    Whatever happened to Ampyra?

    I never see any recent posts on it. Is anyone still taking it. I'm having so much trouble walking. Maybe it's time to talk to my neuro about it,

    #2
    I'm finally getting a resupply of it today. Helps me a lot... it's worth talking to the doc about.

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      #3
      I am on it and it works for me. Had a lot of trouble with the insurance company because the neuro at the time did not time my walk. New Dr did and my prescribtion has been uninterrupted. I can't run or walk a 5k, but I don't need a walker. Talk to your doctor about it and make sure the Dr times your 25 foot walk. You will need to show a 25% improvement after your free sample

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        #4
        I've been on it since 2009. I've progressed to mostly using a wheelchair with very limited walking using a walker.

        After my Letrada treatment this past July I asked my neuro if I should remain on it and he said yes since it's been shown to help with strength besides just walking.

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          #5
          Hi palmtree~

          Here is a sticky thread started a year ago about Ampyra - in case you haven't run across it yet http://www.msworld.org/forum/showthr...n-about-Ampyra

          I tried it about 5 years ago and had no side effects whatsoever. It seemed to give me an energy boost, but it didn't help my walking. I tried it for 5 month. It's definitely worth trying though.
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

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            #6
            It's good to hear some of you are benefiting from it. I imagine it would be one of those drugs that the insurance gives you a hard time about because it is so expensive. I have Medicare but probably couldn't afford the copayment.

            My next neuro appointment is in January. Then we can see.

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              #7
              If you're already on Medicare you should be covered. I am, and both the payment and co-payment are taken care of.

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                #8
                I've been on one form or another of it since 2010. Before Ampyra was FDA approved, I was on an earlier version of the drug made at a compounding pharmacy, 4-AP.

                Recently, my MS Specialist took me off it, because burning nerve pain has gone way up. (Gabapentin doesn't touch it) He said this drug can make that worse because it "excites the nerves." Wouldn't say I notice much of a difference in that since I stopped, and can't take the other med he prescribed for this type of nerve pain (Doxepin) due to side effects. Unfortunately, I also notice a difference in my strength without it. Hopefully, he prescribes another med that helps with the nerve pain and I can go back on Ampyra. Having to make a choice between walking and pain is so unfair!

                Good luck to you getting the drug, and I hope Ampyra helps.
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

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                  #9
                  Kimba, I'm sorry about your nerve pain--I have it too, so I know how awful it is! You mentioned doxepin. That's a sleep med, right? I take Ambien, and that takes the pain away, at least at night. I wonder if that would give you the same side effects or not. Have you tried it? Obviously, it's not an answer for the daytime, but no pain for at least some hours is better than nothing.
                  PPMS
                  Dx 07/13

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                    #10
                    Originally posted by J-Bo View Post
                    Kimba, I'm sorry about your nerve pain--I have it too, so I know how awful it is! You mentioned doxepin. That's a sleep med, right? I take Ambien, and that takes the pain away, at least at night. I wonder if that would give you the same side effects or not. Have you tried it? Obviously, it's not an answer for the daytime, but no pain for at least some hours is better than nothing.
                    Hi J-Bo,

                    Sorry to hear you have this, too. Doxepin is a tricyclic antidepressant, but you are right, it's also prescribed off-label as a sleep med. (Lamictal is another one that gets prescribed for sleep) Which is why I was told to take it at bedtime. Tricyclic antidepressants are also prescribed for nerve pain in MS, which is why my MS Specialist prescribed it for me. He first mentioned Cymbalta, but from what I remember years ago, it didn't help. Kind of bummed, he said he's had good results with this one for burning nerve pain. Really want to go back on Ampyra, but can't help but worry it might make it even worse now.

                    Interesting you mentioned Ambien. I take that too, but never made any connection that it helped with the burning at night. Maybe I should pay closer attention to that on the few nights I don't take it? Seems like for me, the burning usually calms down during the night (or whenever I'm sleeping), anyway, but will start going back up again shortly after I wake up.

                    Thanks for the suggestion, though, and hope you find something that helps with your pain during the day
                    Kimba

                    “When you change the way you look at things, the things you look at change.” ― Max Planck

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                      #11
                      no more ampyra

                      Originally posted by palmtree View Post
                      I never see any recent posts on it. Is anyone still taking it. I'm having so much trouble walking. Maybe it's time to talk to my neuro about it,
                      Hi. My name is Rand. I stopped taking ampyra, aka Fampyra in Canada, about two weeks ago after being on LDN since Aug 31.

                      I was officially diagnosed with PPMS in 2012. Just before finding LDN I was so weak and fatigued I was sure I would be in a wheelchair in a matter of weeks.

                      After three weeks, and a beer, I walked a block, bought an ice cream and sat for 15 min, then walked four blocks home, with a one min rest after three blocks. And the next day I wasn’t sore or stiff from the exercise.

                      Since then I still get stiff muscles, but they’re stronger. I have been having trouble sleeping, but that may be because of my environment (two teenage sons). I can now work physically for a couple of hours a day, now and again, which I haven’t done for a couple of months.

                      The regime I’m following now includes;
                      Modafinel – Two in the morning (down from three, started six months ago)
                      MM and ibuprofen for pain
                      Naltrexone – 2 ml before bed
                      A healthy, organic diet with supplements.

                      I also use an electrical muscle stimulator (EMS), about the size of a transistor radio, most days, to exercise different muscles. I began physiotherapy three years ago; once every two weeks, last year, once a week, and now twice a week for massage and adjustments.

                      Anecdotal evidence suggests LDN works for some people, not for others, has minor side effects, and progression could stop for some people. If that happens and this is as good as it gets, I’m fine with that. But if not, I’m better now than I was and I’ll enjoy what I can, when I can.

                      I've become something of an advocate and don't understand why more people aren't trying it. The oldest post on LDN i have found is from 2011, by Knuckle, which I urge you to find.

                      If you decide to try ldn, research extensively, talk to doc, and make up your own mind.

                      Best of luck.

                      **edited by moderator in compliance with guideline 14**
                      Last edited by Kimba22; 10-09-2015, 01:53 AM.

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                        #12
                        I took ampura for a couple of months a couple of years ago. I had no side effects, but I had no positive benefits either. Dr and I both agreed, I no longer take it.
                        Karen

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