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    Ampyra

    Hello,
    Has anyone suffered from side effects from Ampyra? Last week my 76 yr old mother, stopped taking Ampyra after 2 yrs. This was the first MS drug she had ever taken. She was diagnosed 30+ years ago. She is a "perfect storm" patient, dealing with not only MS, but also NPH (brain shunt implanted 11 months ago) and a permanent catheter patient (2 years) due to her atonic bladder (MS related).
    Since going on the Ampyra we noticed increased:
    Confusion
    UTI's (timing coincided with catheter - started Ampyra the month before the catheter was implanted)
    Difficulty swallowing
    Trouble sleeping
    Constipation
    Balance Issues

    Her neurologist said we can't be sure these problems are Ampyra side-effects, but at this point we couldn't overlook the coincidences and we feel that walking faster does not outweigh all of these other issues.
    Has anyone come off Ampyra and seen these side effects subside?

    #2
    I don't have experience with Ampyra but unless there is a huge reason not to, why would you not stop medicating with it for a time to see if your mother improves?

    It does contain 4AP, a poison which scares birds away by inducing seizures in them.

    Amprya does improve walking speed short-term but at what cost long-term? It is debatable whether Amprya is beneficial for anything but a temporary improvement in walking speed. It can cause seizures and renal failure in some people. You may want to google "Amprya bird poison" and read several articles.

    Please forgive me if I alarmed you by posting this. You are a wonderful daughter for taking loving care of your mother. I am saying a prayer for you and your mother. Best Wishes.

    Comment


      #3
      I was on Amprya for about 8 years and did not experience any side-effects when I stopped.

      I stopped due to my PPMS disability reducing me to a wheelchair and the lack of any advantages by continuing on it.

      Comment


        #4
        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 (any medicine) and of course the cost. CVS Specialty Pharmacy currently has my prescription. Any feedback would be much appreciated.

        Thanx a lot!!

        Comment


          #5
          Ampyra and Tysabri have completely separate uses. Tysabri is used to hopefully control the progression of the disease. Where ampyra is used to improve nerve conduction and walking.

          Like Tysabri, there is no schedule to discontinue ampyra. When you no longer want the realized, or perceived, benefit from the drug you can stop taking it. I know many people that have believed the ampyra wasn't working until they stopped taking it and noticed the difference.

          If you decide to proceed with the ampyra I hope it exceeds your best expectations.

          I hope that answers your questions and I wish you well.

          Comment


            #6
            Originally posted by tinytimsmom View Post
            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 (any medicine) and of course the cost. CVS Specialty Pharmacy currently has my prescription. Any feedback would be much appreciated.

            Thanx a lot!!
            Shortly after diagnosis, my neurologist recommended I try Ampyra to see if it helped with my walking. It was new, and she said 30% found it very helpful, 30% found it somewhat, and 30% found it helped not at all. The company, Acorda, was subsidizing the cost so my out-of-pocket was only $40.

            I was on it for 6 years, and for several years I really felt it was helping. However, with Medicare around the corner, and the cost of the drug would no longer be subsidized, I decided to try 4AP, the compounded form of Ampyra. It was the same price, and I actually felt it worked better.

            I did 4AP for a couple years, but then I decided to try removing all the drugs I was on to see what the effect was. Surprisingly, I found I was fine without them all, and now the only drug I'm on is Tysabri, and I've even reduced that to once every 49 days.

            Looking back, I'm wondering if my time on Ampyra couldn't be filed under the "placebo" affect; it was working because I believed it was working.

            I'd say give it a go if the cost isn't prohibitive. You'll know almost immediately if it's working for you, and if not you can quit. It never affected me in a negative way, and I had no problem stopping it cold turkey. I don't think you have anything to lose.

            Comment


              #7
              Originally posted by ru4cats View Post
              I'd say give it a go if the cost isn't prohibitive. You'll know almost immediately if it's working for you, and if not you can quit. It never affected me in a negative way, and I had no problem stopping it cold turkey. I don't think you have anything to lose.

              They still offer a 60-day free trial.

              https://ampyra.com/prescription/free-trial?

              Comment


                #8
                During my visit with my neuro a couple weeks back he asked how I was doing on ampyra. I had to tell him I wasn't on it. He got an embarrassed look on his face and read from his notes from last year that we should consider ampyra. Then he looked at his notes from the year before where he said we should consider ampyra. Then he looked up and said well, I think it is time to try ampyra! So I talked with the pharmacist about the testing and 2 weeks of no driving in case of seizures and next month I will be starting ampyra. I am hoping for the best!

                Comment


                  #9
                  Ampyra is a go.....I will go forward from here.

                  Thanks to all that have replied as of today with my ampyra inquiry. I am all for trying it. As one of you said, I can always go off of it. I will also look into the free trial of ampyra. It may take some time for me to work out the paperwork, dr. approvals, and such. But I will follow up when I can. I will keep in touch. This message board has helped me out tremendously so far. I have nothing to lose. Thank you all!

                  Comment


                    #10
                    There is also a co-pay assistance program you may qualify for if you have commercial insurance.

                    https://ampyra.com/cost-patient-assistance

                    https://ampyra-hcp.com/financial-assistance

                    On a side note, co-pay assistance programs are also beneficial in helping meet co-pay/ coinsurance deductibles. A welcome benefit, especially as the new year and new deductibles to be met are just around the corner.

                    A generic equivalent of Ampyra (Accordia pharmaceuticals) is Mylan's Dalfampridine Extended-Release 10 mg Tablets. It was approved by the FDA in October 2018. Your neurologist would need to write a script specifically for this one. Not sure of the exact cost, but should be cheaper. Dugs.com and GoodRx.com offer coupons with prices ranging prices from as low as $92 a month at pharmacies near me. The coupons are for cash paying patients only and and are not valid with insurance plans.

                    4-Aminopyridine (aka 4-AP) capsules from a compounding pharmacy is another option. I had luck with this before Ampyra was FDA approved. I don't know what it costs now, but was $40 month back when I took it then.

                    I hope this info is helpful, and wish you the best of luck!
                    Kimba

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

                    Comment


                      #11
                      I had a recent conversation about Ampyra with my MS Specialist, as she suggested it for me when I brought up problems with walking.

                      I asked her about side effects. The only one she mentioned was trouble with sleeping.
                      Last edited by Mamabug; 11-11-2019, 10:26 PM.
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Originally posted by Mamabug View Post
                        I asked about side effects. The only one she mentioned was trouble with sleeping.
                        The most noteworthy Ampyra side effect imight be the lowering of your seizure threshold. While seizures are still rare on ampyra it's still more noteworthy than trouble sleeping. Granted the occurrence of insomnia as an ampyra side effect is much more common patients should be fully informed of the more threatening side effect.

                        I fully knew of the risks and so glad I started ampyra.

                        https://www.fda.gov/drugs/drug-safet...-dalfampridine

                        Here's a link to the full patient medication guide
                        https://ampyra.com/medication-guide.pdf?v=2

                        I wish you well...

                        Comment


                          #13
                          Is Ampyra right for me? Not yet approved

                          Well, I haven't gone forward even now with Ampyra yet. I applied for the free trial. But I cannot get on it since I am on Medicare.That left me really discouraged. I am still interested in Ampyra even after all this time. But hesitant to apply for a grant right now due to the Carona Virus. Stay tuned. I am determined more now than ever to get on Amprya.

                          Those that have been effected by this virus. My prayers to you and your family!

                          Comment

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