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    #16
    Thank you thank you thank you!

    For everyone's posts and especially your story, Jenna. I just picked up my first month's supply today, read through the info sheet and started panicking. The list of side effects are terrifying, and I know the reasoning for it but still couldn't get past them. Then I decided I better find someone who's tried it and see what they say. After reading people's posts I am glad to see I am not alone in this. I laughed (thru the tears) when I read you just stared at the pill for a half hour - cuz that's what I've been doing for the past hour and a half! I am a believer in the power of positive thinking and self-fulfilling prophesies so I was afraid to start when these fears were so strong. I now feel a lot calmer and am ready to try. So thanks, all. I will post updates, too, as I can't wait to see how well it works for me! Fingers crossed 😊
    Dx 1991, remission til 2007 so now SPMS.
    Currently on Tecfidera and Fampyra.

    "It is the possibility that keeps me going - not the guarantee." N. Sparks

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      #17
      Just took my first pill about 2 hours ago...

      I too was as nervous as heck, but I finally swallowed it! So far so good and will keep you all updated. Thinking positive thoughts and wish you all the best with this as well

      Beth

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        #18
        Thanks Jenna

        Jenna thanks for your reply. I have been trying baclofen for the past 2 weeks for my leg stiffness and haven't been online for awhile. I don't like the baclofen-it makes me tired, spacey, thirsty, weak, headache and so far not helping my legs so I plan to titrate off and stop. I am glad Ampyra is helping you and I will ask my neuro about it next visit. I am 52 and did read people over 50 have to be careful with taking it so I need to ask about that as well. I wish you continued success with Ampyra and please know your posts are very helpful and hopeful!!
        Lynn
        PS. Beth, best of luck to you as you start Ampyra. Keep us posted!
        DX RRMS 1990-NO DMD'S FOR A FEW YEARS. EVENTUALLY STARTED AVONEX FOR 15 YEARS. DX SPMS 2013-STOPPED AVONEX. STARTED LDN 3MG NOVEMBER 2013.

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          #19
          So far so good

          It's been 10 days and I know it's soon but I think it's helping. My recovery time after exercise/housework is less, I don't drag my left foot as much, and my mom says I seem to have more energy. I know that I'm no longer worried about leaving my house. The fatigue was so bad that I didn't want to go anywhere even for short periods of time. Yesterday I actually considered going shopping for shoes! Lol. I haven't yet, but the thought doesn't scare me anymore.

          Side effects - I can't think of anything that troubles me. I have developed a schedule so that there's at least a couple of hours between everything, and my phone beeps every 12 hours so I'm not late for a dose of this one.

          So it's so far so good for me. I'm hoping the next week gets even better. And feeling hopeful is a good thing ��
          Dx 1991, remission til 2007 so now SPMS.
          Currently on Tecfidera and Fampyra.

          "It is the possibility that keeps me going - not the guarantee." N. Sparks

          Comment


            #20
            I Wish Ampyra Was On A 24hr Schedule

            Hi everybody! Just giving you an update. First of all, Jaxun, I tell you once you get that feeling that you can walk in a store for more than 5 minutes, you'll be bouncing off the walls! It's amazing the things I took for granted before MS! Now a short trip to the mall is like a trip to someplace awesome like outer space!

            I'm still not able to walk for long periods of time. Right now I can go to the mall and visit a couple of stores though. I'd say I can walk steady, or stand and browse about 30-60 minutes before I feel a decline. However, it's also because it seems to happen around the time it's getting close to my next dose. I wish it was a once a day pill so I could have more stamina all day instead of wearing down about an hour, hour and a half before it's time for dose #2. I take mine at 7:30 am and 7:30 pm as in early because it gets my day off to a start once it gets in my system and in the evening around that time I can wait an hour or so for it to kick back in and have stamina to do evening activities.

            I watch the clock like a hawk! I notice that the effects start to wear down such as my stamina and my leg strength or locking up sensation about 6:00. So that's about an hour and a half before my dose that I start to notice it's thinning out and I'm wearing down.

            I still am so happy to be walking though. I am just in the process of learning my limits which is hard because there are so many outer factors. I can't wait to see neuro #2 on the 9th and actually stand up and walk to him when he enters the room as last time I saw him I was in a wheelchair. WOOHOO

            On a side note, I'll be finding out about my WBC and if I can start taking Vitamin D again and my liver enzymes since I've been on the Gilenya. I'm pretty nervous. Gilenya has been the drug for me and I don't want anything to affect my ability to stay on it. No flare ups for 7 months now!

            Anyway, just letting you know what's going on. It's nice to see I'm not the only one that took a few moments before the first dose. My neuro #1 thinks it's hilarious. He's ordered me not to read information that comes with meds he prescribes me because he knows I always find something to freak out about!

            Hope you all are getting ready for the upcoming winter holidays! Wishing you the best and I will check back after my visit with the doctor next month and update my posts. Y'all take care

            ~Jenna
            RIP Jenna's Beloved Momma
            Best MS Support System Ever
            7/42 - 12/12

            Comment


              #21
              Still going

              Well, three weeks in and things are going well. I gave them an update and they agree this med seems to be working for me. Yay! Just have to do the timed walk and bloodwork, so fingers crossed that those are good.

              I'm not a real fan of their measuring technique - 25 feet doesn't seem like a good indicator for me. A better one, I think, is that before I started the drug it took me more than 10 mins to walk .25 miles on my treadmill. Today I did it in 8:02! And I did a whole minute at speed 2.2 mph! Exciting stuff, I tell you . I still had to have both hands gripping the arms, but I've started trying to use only one hand for a bit. This only lasts for a few secs as I'm not a fan of falling on my face, but it's a start. I was able to stay on for 15 mins today. Yahoo! Never thought I'd see the day when I looked forward to exercising.

              New symptom - I have been getting some increased flushing in my face the last couple of days, but I don't know if it's from this med, the Tecfidera, anxiety, or if I'm starting 'the change.' Info says discuss with your doc if it's a great concern, but at this point it's only a minor inconvenience.

              Here's a weird thought. Since this drug is called a potassium blocker, has anyone wondered about eating bananas? I asked my biogen rep and she said she'd check but I haven't heard back. Just wondering if anyone else had the thought.

              But I'm loving this new energy. My walking issues are fairly recent (really declined in the past 6 months) so sometimes when I'm at the store I feel almost 'normal' - you know, when your brain has that memory of motion and your body does it? Without having to pre-plan every movement? It's awesome! And like Jenna says, it's like going on a new adventure.

              Happy Thanksgiving for those living in the US. I'm feeling pretty thankful today, myself
              Dx 1991, remission til 2007 so now SPMS.
              Currently on Tecfidera and Fampyra.

              "It is the possibility that keeps me going - not the guarantee." N. Sparks

              Comment


                #22
                Started Ampyra 2 1/2 weeks ago

                I started Ampyra 2 1/2 weeks ago. This stuff is good. I started to see the effects on the second day. I actually walked 1/2 a block without straining on my cane. I felt exhilarated!

                Very few side effects...A small headache here and there, a little fuzziness, a little nausea (which told me I should take it on an empty stomach). Some insomnia...but not too bad. I just don't take a nap and the next night I sleep like a rock.

                The benefits I have felt far outweigh the side effects. At least I can now do more than I could before. Fatigue is something I can work around now. I still have to be mindful of the energy spent doing tasks and to not overdo.

                I do start to feel it wearing off about an hour before my next dose and there is a very noticeable difference in my walking when it does.

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                  #23
                  Ampyra

                  I'm an early adapter! I've been on Ampyra for 4.5 years.
                  Although I was diagnosed 11 years ago, I've never had problems with walking...

                  Wish there was a tried and true Ampyra copy cat that helped with cognition...Aricep is available for Alzheimer's but it has also been prescribed for MS. Haven't tried that yet!

                  Chris

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                    #24
                    Update

                    I walked through Meijers and actually did some looking around a few days ago. It was great. Thought it was because it was just a good day for me.

                    Yesterday afternoon two of my dearest friends "kidnapped" me and took me out of town for a girls day out.

                    We went to the mall. That is something I have not done in years. They offered to get me a wheelchair to zip me through (although I think they just wanted to race in wheelchairs because they are that crazy!) I declined.

                    I walked through the mall......I could not believe it. I took a few stops on a bench while they stopped and shopped in a clothing store. We got pedicures. We had dinner.

                    My left leg only had trouble once...because I was trying to move to fast instead of at a steady rate.

                    I felt exhilarated! I woke up this morning and feel fantastic!
                    My next goal is to walk into town in the spring...after the snow and ice is cleared...

                    Comment


                      #25
                      Plateau?

                      RColeman - that's fantastic news! The joy at doing something we once took for granted is quite the feeling.

                      I've been on Fampyra (that's what we call it here) for almost 9 weeks, and I don't notice any side effects anymore. I also don't notice any changes soon before my next dose is due, like a lot of other people. I think I reached a plateau at around 6 weeks as I don't see any new improvements anymore. I was able to get my walking speed up to 2.4 mph for a couple of minutes but in general I don't think I'm any better than I was at that point.

                      Of course with the holidays I've been pretty busy and it's affected my time at the gym as well as the increase in activities at home, so I'm sure that's taking its toll. Two Christmases done and only two more to go (blended families and Ukrainian Christmas dinner) - what a busy December and January! Sometimes I'm not sure if I should continue this med or not, but then I read my last post and I get all excited again for the improvements I have seen since I started. And knowing it's helping others keeps me thinking positive thoughts. So we're gonna keep on truckin' as long as we can

                      Happy New Year, everyone!

                      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
                      Dx 1991, remission til 2007 so now SPMS.
                      Currently on Tecfidera and Fampyra.

                      "It is the possibility that keeps me going - not the guarantee." N. Sparks

                      Comment


                        #26
                        Unfortunately...

                        I can tell when it starts to wear off. About 1.5 hours before the next dose there is a marked difference in my ability to walk.

                        Last night I made the mistake of taking a rather warm bath (I know...not the smartest thing to do) compounded by taking the bath too close to the next dosing time. Needless to say my sons had to help me get from the bathroom to my chair.

                        My sons can tell when it is getting close to the next dose. Now they ask if its time to do so if I'm struggling.

                        Comment


                          #27
                          Daylight Savings Time and a howdy to the Ampyros, Ampyrettes, and Ampyra Curious!

                          Well, it's been awhile (long) since I've been around. I pop into chat a little but y'all can blame it on the Ampyra I've been a busy bee since about Thanksgiving non-stop! It feels great to be back to cooking and spending time in the kitchen. When I start to realize I'm pushing it, I just grab a chair and do anything I can do while sitting.

                          I don't seem to of reached a plateau. Everyday it seems there's more to do... and I can do it! I still wear down around dose time, but get back on track after a short rest. I am at a point where I leave the house or the car and don't even think about my cane. I keep it near in case, but my brain has worked it's way out of (or maybe into) a "cog fog." I seem to take off to do something and am halfway to the car before I realize I don't have my cane.

                          If you have a chance to try it, go for it! You've nothing to lose and everything to gain! If it doesn't work for you, it's just another battle scar in the battle against MS and you can proudly say you gave it your all!

                          Oh, the specialty pharm called to set up delivery and as always they asked the same questions with the last being if I had a ? for the pharmacist. I did this time. It was about Daylight Savings time and adding an hour to my day, how should I proceed with this medicine in particular. No changes with my other meds, but this is so tailored to be 12 hours apart like clockwork how should I take it. He was glad I asked because right now I take it a 7:30 am and 7:30 pm (It'd of been 7 if I wouldn't of stared at the first pill for a half hour before I started taking it lol) Anyway, he said that I should take it an hour later, so at 8:30. He said having more than the morning and evening pill in a 24 hour period increases your chances of seizures. And taking it at 7:30 would count as a 3rd pill that day. So I was glad to of asked, and if you're unsure ask your neuro or pharm (specialty is best, reg pharms aren't big on Ampyra education it seems) I'll actually be taking it an hour and a half later since I can take it with my Gilenya at 9 So no more getting up at 7:30 then going back to sleep for an hour and a half just to get up for more meds! He said a half hour later would be okay, so instead of an hour later I'll be taking it the first day (Sunday) an hour and a half later than I do now.

                          Hard to believe this year is flying by already! Congrats to all the new Ampyra people and learn more to those of you who are curious because it might just be what you need to get your feet moving again. My goal is to be able to do my favorite line dance in a country club again someday before this MS tries harder to bring me down. I'm doing my best to not let that happen. As Reba sings, "I ain't goin' out like that!" I wanna be the one singing "Everybody here comes the life of the party!"

                          Y'all take good care and hope to see you around! LOL @ all who were scared at first like me, it feels good to know you're not alone. At MSWorld we never are alone, there's always someone who's been through what we're going through! I love this place and I love all y'all ~ We're SURVIVORS! We're fighters! My momma used to tell me all the pock marks and red marks, bruises and dents on my body from taking shots were my battle scars!! I loved her for that, I'm hoping I'm doing proud by her. I wish... well, you know, it's all good. Y'all were there for me then. It was the stress and grieving that put me in a wheelchair, and here I am today walking! I tried. You can always try, at least you can say you did That's a good feeling too!

                          L8r G8rz {{{{MSWorld}}}} Hugs to y'all!

                          ~Jenna
                          RIP Jenna's Beloved Momma
                          Best MS Support System Ever
                          7/42 - 12/12

                          Comment


                            #28
                            Wow Jenna! What a great testimonial story! So glad this has helped you and thanks for the encouragement to others. You should be the Ampyra poster child

                            Thank you for sharing your story. I hope you're singing and dancing that line dance before long
                            1st sx '89 Dx '99 w/RRMS - SP since 2010
                            Administrator Message Boards/Moderator

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                              #29
                              Prescription for ampyra

                              Had my six month appointment yesterday. No new lesions and a prescription for Ampyra! Bad news is my Neurologist is leaving. I am hoping that the Ampyra works for me and that I can find a new neurologist as good as the one I have now

                              Comment


                                #30
                                THANKS FOR THE INFO

                                Originally posted by JennacydeL View Post
                                Hi everybody! Just giving you an update. First of all, Jaxun, I tell you once you get that feeling that you can walk in a store for more than 5 minutes, you'll be bouncing off the walls! It's amazing the things I took for granted before MS! Now a short trip to the mall is like a trip to someplace awesome like outer space!

                                I'm still not able to walk for long periods of time. Right now I can go to the mall and visit a couple of stores though. I'd say I can walk steady, or stand and browse about 30-60 minutes before I feel a decline. However, it's also because it seems to happen around the time it's getting close to my next dose. I wish it was a once a day pill so I could have more stamina all day instead of wearing down about an hour, hour and a half before it's time for dose #2. I take mine at 7:30 am and 7:30 pm as in early because it gets my day off to a start once it gets in my system and in the evening around that time I can wait an hour or so for it to kick back in and have stamina to do evening activities.

                                I watch the clock like a hawk! I notice that the effects start to wear down such as my stamina and my leg strength or locking up sensation about 6:00. So that's about an hour and a half before my dose that I start to notice it's thinning out and I'm wearing down.

                                I still am so happy to be walking though. I am just in the process of learning my limits which is hard because there are so many outer factors. I can't wait to see neuro #2 on the 9th and actually stand up and walk to him when he enters the room as last time I saw him I was in a wheelchair. WOOHOO

                                On a side note, I'll be finding out about my WBC and if I can start taking Vitamin D again and my liver enzymes since I've been on the Gilenya. I'm pretty nervous. Gilenya has been the drug for me and I don't want anything to affect my ability to stay on it. No flare ups for 7 months now!

                                Anyway, just letting you know what's going on. It's nice to see I'm not the only one that took a few moments before the first dose. My neuro #1 thinks it's hilarious. He's ordered me not to read information that comes with meds he prescribes me because he knows I always find something to freak out about!

                                Hope you all are getting ready for the upcoming winter holidays! Wishing you the best and I will check back after my visit with the doctor next month and update my posts. Y'all take care

                                ~Jenna
                                BOY, NO KIDDING ABOUT FINDING OTHERS WH0 HAVE TRIED THIS DRUG. IM GOING TO START A CLINICAL TRIAL NEXT WEEK AND IM A LITTLE SHAKY ABOUT IT. ITS GOOD TO SEE THAT SOMEONE IS HAVING SUCCESS WITH THIS DRUG.
                                You don't stop laughing because you grow old....you grow old because you stop laughing!

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