***** Have you taken AMPYRA? *****

***** Have you taken AMPYRA? *****

 

 

 

We want to wish everyone a safe and fun Memorial Day weekend. Sending out many thanks to our brave military who put their lives on the line for us and the freedom we all enjoy on a daily basis.

We want to hear from you. Since its FDA approval this year, many MS patients have taken AMPYRA. Others would like to know how it’s working, how it’s helping to relieve MS symptoms. Please come share your AMPYRA experience with us.

When AMPYRA was approved by the FDA for use in March of this year, it was unknown at that time how soon it would be prescribed for use by MS patients. However, much to our happy surprise, we have heard from many who have had success with it, saying that it significantly relieves their MS symptoms, and most importantly, say that it helps them walk. This is wonderful news!

If you are looking for more information and resources about Multiple Sclerosis (MS), you can find it on our web site. We encourage you to log on to
Disability Connections, and ask you to please JOIN our membership. It's FREE and will enable you to connect to and interact with others who share your unique challenges.

 

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Comments

  • 5/31/2010 9:30 PM Ellen Parker wrote:
    I absolutely love this drug. I have been able to go go go since I've been on it!! LOVE IT!!
    Reply to this
  • 5/31/2010 9:31 PM Michele Rickman wrote:
    I had really bad side effects from it like - very tired, lower back hurt, VERY dizzy!!! Couldnt function.
    Reply to this
    1. 9/24/2010 3:01 PM h braden wrote:
      I took Am[pyra for 3 mos. and hated it. After complaining several times to my neuo., he took me off of it. I was so happy I could have cried. I was in a constant state of dizziness for 3 months! Ampyra was messing with my mind. My neuro. put me back on 4AP, which I had been taking for several years and I'm back to normal. Ampyra was absolutely bad, bad, bad for me.
      Reply to this
  • 5/31/2010 9:31 PM Lorrie Stoner-Mazur wrote:
    I have been on it for just a month now and have noticed some improvement.
    Reply to this
  • 5/31/2010 9:32 PM Ginger Allard Cusson wrote:
    I've been on it since mid april. it definately has made walking easier.
    Reply to this
  • 5/31/2010 9:33 PM Kim Kok Tyler wrote:
    I cant wait to try it! Getting our taxes back tomorrow and I can then apply for the Amprya drug assistance program hopefully by July 1st I will be on it I cant wait! Just need the funds to get it.
    Reply to this
    1. 8/31/2010 11:05 PM VALERIE wrote:
      Ampyra's co-pay assistance program will pick up all but $40 of your co-payment. In other words if your insurance pays all but $100 for Ampyra, then the co-pay programs picks up $60 and you pay $40. My insurance pays what I used as an example, so I pay $40. No complaints here! It is helping me some, but I have only been on it 3 weeks. I am in a wheelchair, but I have noticed some changes such as I can think clearer, much easier to transfer, fatigue is less. I hope for better days to come. I hope this reply helps, good luck
      Reply to this
      1. 10/7/2010 3:36 PM Summer wrote:
        I was on Ampyra for 1 month and saw results. I went to refill the script and was told that I've been denied the prior authorization, twice. Anyone else having issues with their insurance not approving this medication?????
        Reply to this
  • 6/2/2010 5:01 PM Deborah Schneider wrote:
    I finally got approval for Ampyra and it was delivered today, will start taking it tonight.  I have high hopes for it.  I have primary progressive MS. I will let you know how it goes!
    Reply to this
    1. 6/28/2010 12:04 AM Christine wrote:
      Hi Deborah,
      How did it go with the Ampyra?  Has it helped you? I too have high hopes for this drug and the ability to walk a little better.  Hope it's going well.

      Reply to this
    2. 10/28/2010 2:07 PM Margaret Brush wrote:
      Could you let me know how you do on Ampyra. I take 4AP. I all so have PPMS.
      Good Luck. Hope you feel better.
      Thanks, Margaret
      Reply to this
    3. 12/21/2010 11:18 AM kathy cocks wrote:
      I have been taking Ampyra for 3 months now. I have noticed improvement in my leg strength. I would recommend taking Amprya the first thing in the morning. I take it around 6 o'clock am and then take my second dose around dinner time ( 6'0clock pm. ) The later in the day you take it the more of a chance it will effect your sleeping. Good luck.
      Reply to this
  • 6/3/2010 2:39 PM Kellie wrote:
    My husband started taking Ampyra and it was wonderful, then all of a sudden after being on it for 3 1/2 days he had vertigo REALLY bad.  His doctor said to stop it for a week, then to start back up with only 1 dose per day for a week, then to go back to the 2 doses per day.  Has anyone else had any problems. He really wants to go back on it, but hates the dizziness.  PLEASE HELP! THANKS.
    Reply to this
  • 6/25/2010 11:49 AM Chrissy wrote:
    I have secondary progressive MS. I have been taking AMPYRA for 1 1/2 days.  I get dizzy when I first take it but it goes away.  I must admit that I am very worried about side effects.  I take the 2 doses at noon and midnight.  So when I get dizzy at midnight at least I am laying down.   I also have high blood pressure but I take something for that.  Good Luck to everybody!
    Reply to this
    1. 6/28/2010 12:06 AM Christine wrote:
      Hello Chrissy,
      Are you tolerating the Ampyra and if so, have you noticed any improvements with walking ability? Thank you

      Reply to this
      1. 6/28/2010 11:13 AM Chrissy wrote:
        Hello Christine,
        I seem to be tolerating the Ampyra so far.  The only thing that I noticed is that I feel better in general most of the time.  I have drop foot so I try to just pick it up walking every morning.  That has not made any improvement.  I will excerise my leg more and keep trying each morning.  My leg muscles might be weak from lack of use.

        Reply to this
  • 6/28/2010 12:08 PM Monique Shea wrote:
    I have been taking Ampyra for 3 weeks now.  I'm walking better than I have for the past 15 years.  Guess I'm one of the fortunate "super-responders"---without side effects!  A word of caution-Ampyra tablets look very similar to Nuvigil.
    For me, Ampyra has truly improved the quality of my life.  Hope many others have similar experiences!

    Reply to this
  • 7/2/2010 2:25 PM Claire wrote:
    I have been taking Ampyra for three days, morning and night. The morning dose makes me very dizzy and I have to be very careful since I alreay have balance problems. No other effects yet, but hopeful the dizziness will fade and MS symptoms will improve.
    Reply to this
  • 7/6/2010 3:29 PM Tracey wrote:
    This medication is some GREAT stuff. I have noticed BIG improvements in just about everything. I am only on my second month with it, but I can already see and feel the difference in my walking. I no longer use any assistance to get around. I feel like I get a little more of my old self back every day. And its great that other people notice it too. Its even better that its not another shot...just a pill. LOVING IT!
    Reply to this
  • 7/10/2010 8:04 PM Linda Dykas wrote:
    I have been taking Ampyra since Tuesday, July 6 at 8pm. I take it every 12 hours - 8am and 8pm. I haven't gotten any side effects and my left leg appears to be getting stronger. I have bad balance and I think that has improved also. I'm hope that I continue to do better. I'm happy for everyone that has had good luck with this drug and if you haven't don't give up. It may take a couple of weeks before you notice a difference, at least that's what I've read on different posts and forums.
    Reply to this
  • 7/10/2010 8:05 PM Linda Dykas wrote:
    I would like to join this blog. Thanks.
    Reply to this
    1. 7/11/2010 10:50 AM Gary wrote:
      Hi, Thank you so much for your interest in joining our blog. Our blog is completely open to anybody and everybody who wants their voice heard. At this time comments are subject to approval by a our moderator. This is is done to unsure that  nobody can post absence or inappropriate subjects. Relevant comments will always  be approved within 48 hours. You can subscribe to the blog or to specific topics of interest. As always we thank you for you participation and certainly encourage you to post comments as often as you like.




      Howard
      Reply to this
  • 7/28/2010 11:04 AM Rod Barker wrote:
    I've been taking it for 20 days... The first 14 50% dosage, the last 6 full dosage. I have definitely felt my walking is better. I would treadmill at 1.6 MPH and struggle, I've been doing 3.0 in the last week with much better results. My only problem is a little insomnia. I go to bed at 10:00 PM and wake up at 3:30, went to bed at 9:00, woke up at 2:30. It's a little annoying, but not bad.
    Reply to this
  • 8/2/2010 11:03 AM R. Morriss wrote:
    On Day Three of Ampyra. I've noticed the problem with increased dizziness and a bit of mental vagueness - and increased cramping in muscles, but not surprising. Hopefully after a week or three, I'll start getting my life back, too. Hope springs eternal.
    Reply to this
  • 8/17/2010 9:27 PM Michael wrote:
    I took my first does of Ampyra today and I can already see a difference- less heaviness in my legs, less dragging of my left leg and more energy. I'll post again later in the week.
    Reply to this
  • 8/20/2010 9:28 PM Michael wrote:
    Day three and feeling great!I can feel the carpet under my feet!Still off blance but not as bad as before and walking much better and faster.
    Reply to this
  • 8/22/2010 9:55 AM Patient wrote:
    I cannot get Acorda sales team to get me approved and I have great insurance coverage. The problem is they won't coordinate between the doctor and the insurance company leaving everything with my doctor, who is saying they are either not receiving the faxes and when they do they reply but then the fax is not received per the insurance/pharmacy company.
    Reply to this
  • 8/22/2010 12:40 PM Debbie wrote:
    Have been on Ampyra for 3 days. Very shaky, weak, increased tightness in feet, legs, and upper back. Would like to hear if others have had significant side effects first few days and how long it took to subside if it does.
    Reply to this
    1. 8/23/2010 12:24 PM Michael wrote:
      I had the tingling in legs n back pains n still do!I started 8/17 and i havent notice a big change in blance but i'm able 2 walk longer n have more energy.They say stick with it that it will get better,i hope it does!
      Reply to this
  • 8/23/2010 9:59 PM Aphrodite wrote:
    This is my third month on Ampyra. I felt better immediately but like many others in the third month I feel a bit worse. I did develop a UTI and it sems to have exacerbated my symptoms. But I LOVE AMYPRA and I am afraid to stop and that maybe I'll get back to how I felt the first two months once UTI resolves. I was able to put IV's in patients again and could feel my fingertips and toes again. I had more energy and I frequently would forget my cane only to look for a few moments later and laughed as I went to find it. But now...I wouldn't think about walking away from it, Again I hope with the resolution of the UTI I will feel better again. I know its not for everyone...and I hope the wonders of me first taking it will come back!
    Reply to this
  • 8/24/2010 11:13 AM Kathy wrote:
    I have alot of the side effects(8)without being on the drug. I'm afraid to try it. My Doctor suggested it yesterday. I'm afraid it might make situation worse.
    Reply to this
  • 8/24/2010 4:48 PM Aphrodite wrote:
    Kathy, I've been afraid to take anything too...but what choice do I have. I'm not ready to give in yet...so I started Tysabri 4 years ago and started Ampyra three months ago...its a deal I made with the powers that be...keep me as well as you can for as long as you can...and maybe we can learn from me, and maybe I can give people the courage to try something...obviously it doesn't work for everyone but I have gone into this saying I know its going to work. Even though I don't feel as well as I did when I first started, I won't give up because it was one of the most amazing feelings I've had in the past 10 years. Don't be afraid, just be cautious and follow your doctor's direction. Good Luck
    Reply to this
    1. 9/9/2010 7:44 AM SLH wrote:
      Been on Ampyra 6 wks, noticed improvement in walking after a few wks. I did have a bad fall but think I might have been walking fast and tripped! Working w PT to try and get muscles working that have not been challenged in 10+ yrs, I do not want to give up - I enjoyed reading your experience. I too will not give up!
      Reply to this
  • 8/25/2010 5:19 PM Michael wrote:
    Day 8 on ampyra and feeling kinda crazy.I also take betaseron and that alone makes my body weak!I felt great the first 3 days but now the heavey ness is back and its got feeling crazy!Going to stick with it and keep faith that it will gwt better!!!!
    Reply to this
  • 9/3/2010 2:43 PM Carol wrote:
    Thank you all for your feedback! I'll make an apt. with the neurologist and give it a try--can only try!
    Reply to this
  • 9/8/2010 11:24 PM SLH wrote:
    Has anyone else tried PT along w. Ampyra to improve gait? It has taken me 10+ yrs to develop this "limp" and pretty much ignore my left side. I felt like I would need to strengthen muscles to help Ampyra work better, comments on your experience?
    Reply to this
    1. 9/24/2010 4:28 PM Chrissy wrote:
      I have been on Ampyra for 3 months. I am working on strenghening my left side. It has improve ever so slightly. So I am hoping that this what you need to do.
      Reply to this
      1. 10/30/2010 5:54 PM SLH wrote:
        I agree, I've been going to a great PT fellow & the progress is slow but you know it took me 10 yrs+ to walk this way. I'm not discouraged, we all are so different but for me the PT has really added to the Ampyra effects.
        Reply to this
  • 9/9/2010 4:23 PM Jenel wrote:
    I have been on Ampyra for one month tomorrow. I have been one of the lucky ones with no noticible side effects. I have some days that I notice some minor difference, but nothing obvious. How long does it take to be able to have a noticible difference?
    Reply to this
  • 9/11/2010 1:33 PM carolyn wrote:
    Anyone had throat irritation? Am newly on Ampyra about 3 weeks with no noticeable effect yet.
    Reply to this
  • 9/18/2010 8:45 AM Sue wrote:
    My husbands has the Ampyra but we are afraid to start it as he had a nasty UTI last Oct. He had to be hospitalized and was on IV antibiotics. After that he went for short term rehap. So Im just wondering should we take the risk? That was the first time he ever had a UTI and we feel that could have been because he was getting IV steroids and was also on cellcept.What have others experienced? Have many experienced UTI's? And why is this a side effect?
    Reply to this
  • 9/18/2010 10:16 PM Aphrodite wrote:
    UTI's are common in MS as the bladder does not empty completely in many people and if bacteria gets in the bladder it flourishes. I have been Ampyra for 4 months now and have two UTI's, but over the past 4 years I seem to have six UTI's per year. I do catheterize because I cannot empty completely and I believe that is where the bacteria is introduced. Does your husband have prostate problems? The Ampyra made such a difference in the quality of my life that I am willing to take the chance. Good luck in your decision.
    Reply to this
  • 9/24/2010 7:32 PM SLH wrote:
    Chrissy - thanks so much for your comments. It has been 2mo for me and also seeing some improvement - the realchallenge is trying to balance exercise & everyday day to not get too tired. I'm doing both water areobics & PT, some days it wears me out!
    Reply to this
    1. 10/18/2010 3:07 PM Chrissy wrote:
      I am now on Ampyra for almost 4 months. I tried to excerise everyday but it is hard because I am still working. The good news is that I seem to get better. I can now walk little baby steps accross a room without holding onto anything. So I will keep excerising. Best to everybody.
      Reply to this
    2. 10/31/2013 8:03 PM Missy wrote:
      I have been on amprya for about 3 months. It started out great but now it seems like my legs are getting harder to control in small areas. If I am walking a long distance it works better. I also do water aerobics.
      Reply to this
  • 9/26/2010 11:12 AM linda crawford wrote:
    I just started 3 days ago and I have noticed small improvements. Feeling great, only side effect has been a headache. I am very happy with the results I have in only 3 days. I feel it can only get better.
    Reply to this
  • 10/10/2010 11:30 AM carolyn wrote:
    Side effects of throat pain, tiny nausea, general weakness and no real info about whether this stays or diminishes with time have caused me to discontinue. too sad I had such hopes for this miracle drug.......
    Reply to this
  • 10/20/2010 3:38 PM Sandi wrote:
    i have been on Ampyra for 6 weeks and sadly I don't think I am going to be one of the lucky ones. After the first 10 days I noticed a huge improvement and was walking much faster. About the 3rd week, I feel 3 times in 18 hours and since them my walking is much worse. I have read where some people have done good, then done bad and then have gotten better again. I'm sticking with is to see if that happens but I'm disappointed to be at the 6 week mark and feel worse.
    Reply to this
  • 10/20/2010 6:25 PM stephanie wrote:
    My husband has been taking ampyra for about three months. At first I thought it helped him walk and become stronger but now I don't know. He has all of a sudden developed high blood pressure. Has anyone else experienced that.?
    Reply to this
    1. 1/29/2012 3:19 AM twin wrote:
      I also have been taking ampyra for three months and I think my blood pressure is a problem as well. I am going to see my doctor on Tuesday. What happened with your husband's blood pressure? Did he have to give up ampyra?
      Reply to this
  • 10/20/2010 7:33 PM MICHAEL wrote:
    BEEN TAKING AMPYRA FOR TWO MONTH'S NOW AND CAN'T SAY A WHOLE LOT!HAVEN'T GOTTEN NO SIDE EFFECT'S BUT I MISSED A DOSE AND MY WALKING GOT SO BAD AND WASN'T RIGHT AGAIN TILL I TOOK MY NEXT DOSE!SAD TO SAY I'M NOT ONE OF THE LUCKY ONE'S!
    Reply to this
  • 10/27/2010 12:52 PM Sandi wrote:
    I'm curious if you are back to your "pre" ampyra ways? Ampyra originally worked well and on day 11 everything fell apart.I have tried to get off of it 2 times but it actually made me worse if you can believe it. I am 3 days into my 3rd try. I'm wondering if anyone has successfully gotten off of it and if so, how long did it take and did you feel better.. Thanks!
    Reply to this
  • 10/27/2010 2:15 PM Dave wrote:
    Tried 4AP many years ago and discontinued due to side effects - basically increased MS symptoms. Now six years later, my MS symptoms are much worse (RRMS turned into SPMS) and am trying Ampyra - just took first tablet. Having read these blog postings, am planning on taking only one tab per day for a bit, then upping dose to the recommended two per day if it goes well. Worried particularly about insomnia - can't afford not to sleep at night. Current treatments are Avonex once a week and 1 gram solumedrol once a month. Will report back to this blog how it goes. Dave
    Reply to this
  • 10/27/2010 3:49 PM Sandi wrote:
    Funny that you say that you tried 4AP as my neurologist wants me to switch to that to control the dosage. Because Ampyra worked for me initially, he thinks that the dosage on the 10mg is to high and thinks if I started at a lower dosage and increased it, I would do better. I'm second guessing that decision now. I do have insomnia since I started it. I wake up about every 3 hours, and I take Ambien at night which is proving not to work with Ampyra. I have never had trouble sleeping. Everyone is different, you could do really well Dave
    Reply to this
  • 10/27/2010 5:54 PM Conaan wrote:
    I started Ampyra about three weeks ago. I didn't notice any side effects at first. Lately, I've noticed a little dizziness. Today was probably the most intense. I wouldn't call it nausea, but I just felt a wave of illness for a lack of a better word. Then some periods of mental fog. I was having serious difficulty staying focused and work and maintaining train of thought. It reminded me of when I started Copaxone. Those side effects eventually cleared and I'm hoping these will as well. I'm lucky, I'm still very mobile and able to work. Most of my MS issues are fine motor skills, fatigue and loss of strength on my left side. No improvements yet, but I'm going to give this at least 6mos, unless I have serious side effects down the road. I can manage these smaller ones. This isn't as bad as some things I've taken. Best of luck to all. Hang in there!
    Reply to this
  • 10/30/2010 5:58 PM SLH wrote:
    Hi Dave - your comment about Avonex really interested me. I also am on Avonex & earlier this yr another dr put me on another steroid, also low dose for something not MS related & what a bonus, my MS got SO much better. I was ready to take steroids forever but so far have only heard negative comments from both my neurologist & the dr that prescribed it, they are not in favor of any dose steroid for prolonged periods. Have you noticed a great improvement, is it oral or drip?
    Reply to this
  • 11/5/2010 4:12 PM Dave Wilk wrote:
    So a week of one ampyra tab in the morning, now 3 days into twice a day as prescribed. No insomnia, nor other side effects. But no real benefit seen either. I have more energy in the mornings anyway, so I imagined Ampyra was helping the first week, but now taking in the evenings, that second dose is doing absolutely nothing, so I imagine now that the morning dose is not helping either - it is simply a good night's sleep that is working for me - and I heartily recommend that to everyone - especially those of us with MS... I will give it another week, and probably discontinue after that if no change. Anyone disagree with my strategy? Value all considered opinions. Dave PS: RE: sterpid treatment, I get one gram IV infused once a month. That is my favorite therapy - actually get some tangible benefit - feel better for 48 hours or so... Avonex - eh... No benefit seen - just keep taking it cuz I'm scared will get worse if I discontinue...
    Reply to this
  • 11/6/2010 6:42 AM Sandra Smith wrote:
    I never like to give advise, as every MS patient is so different. In the past two weeks, I was weaned off of both Ampyra and Vicodin. I needed to get off of both as Ampyra made me 100 times worse, I have fallen about 25 times since being on it and the vicodin I had been on for three years and I wanted to be off of that as well. After about the 10th day of being off both, I went into a minor MS attack which my dctr. thinks was do the big withdrawal. I had 3 days of IV Solu-Medrol and all my symptoms are nearly gone and I'm back to walking pre-Ampyra days and feeling really good. My dctr told me that the steroids will continue to work solidly for the next 2 weeks which I am looking forward to. I know Ampyra has worked really well for some but for me it was a disaster. These were the worst two months I have ever had since being diagnosed with MS. I am really happy to have both drugs out of my system and feel like I am starting with a clean slate. I wouldn't stop Ampyra cold turkey, I'd go back to one a day first. Good Luck Dave... hope you do well.
    Reply to this
  • 11/7/2010 9:12 AM SLH wrote:
    From all the entries I've read about Ampyra it seems that it is true that it will help some & some it will not. Just like in our MS symptoms & the disease modifying drugs - we all seem to have a different set of challenges (even though some symptoms are common) and we all have different reactions to the drugs we are taking. For me, I seem to do better with ALL MEDICATIONS if I take with food and drink lots of water.

    I've been on Ampyra for a little over 2 months. Very early both my husband & I saw improvement in my walking - but very slight. My dr agreed since I've had MS for 10+ years, maybe some PT would help. Now I'm walking better and feel stronger, I was lucky to find a good PT guy who tried hard to understand MS. I've always been an exerciser but have learned through this experience, I probably should continue to do these exercises to keep my left side strong and to fight against going back to my old habits ie: swinging my leg out, hiking my hip up &lifting my toe as I walk. Here's my question - am I better because of the Ampyra or the PT or both? It does seem to make sense that it has taken me years to walk this way accommodating for my weakness on my left side, so this improvement process may go on for awhile. I see my dr next month, it will be interesting to hear his comments. Although I'm thankful for the improvement, I did not think initially my participation through exercise would play such an important role.

    I thought my experience with drinking plenty of water, eating well & exercises to strengthen & correct might help others hoping to improve with Ampyra.
    Reply to this
  • 11/7/2010 12:21 PM Stacey wrote:
    I began taking Ampyra on Wednesday. First couple of days were touch and go... It's now Sunday. I woke up today with something I haven't had in awhile... Sex drive. I also am feeling more energetic in general. Hadn't really realized what I had been missing until today. Even for someone whose symptoms have been pretty mild, this drug seems to yield benefits.
    Reply to this
  • 11/9/2010 10:16 PM Rosemary wrote:
    I started Ampyra in Sept and it has been 6 weeks. I have had relapsing MS for 25 years which progressed into secondary MS about 2 years ago. That was when my walking deteriorated into drop foot and swinging out my leg to maneuver my gait. I am 65 yrs old. With Ampyra I have noticed an improvement in my stability in walking. I found that taking longer strides really made a difference. I take 2 Ampyra a day at 12 hr intervals. It appears to give me the best affect in the morning and early afternoon. In the evening about 4 hrs before my next pill at 8:30 p.m. I can tell I am back to old habits of swinging out my leg and much slower on the 2 stairs I have in the house. My biggest improvement is getting up from the sofa without making strange alien maneuvers which was pretty frustrating. I also had a try at getting up from the floor to see how that went and it went pretty well. I did have to have something to hang on to but before the Ampyra it was almost impossible to get back up with any dignity. I am hoping as the cost goes down in the future more people will be able to try this drug which will give the manufacturer more feedback which may mean more improvements. The insomnia and getting only 3 or 4 hrs of continuous sleep is the main drawback. For those of you have to go to work each day my heart goes out to you. I take 1/2 of a 250mg tab of NUVIGIL which helps tremendously with the fatigue. Before starting on that I had to take a 2+ hour nap everyday just to make it through dinner time. Time will tell how this will go but it's so great to have something new to try.
    Reply to this
  • 11/20/2010 8:19 PM Dave Wilk wrote:
    One last post to this blog. Earlier this week, I talked with my neurologist to say I had been experiencing pain at right hip (my "bad leg") non-stop and wondering if ampyra might be implicated in this new symptom. She told me others had also complained of lower back pain and if I was seeing no benefit, I should stop taking it, which is what I did. All the best to all of you. Dave

    Reply to this
  • 12/21/2010 1:45 PM Brenda wrote:
    How long do you have to be on ampyra to notice an improvement with your walking? I have been taking ampyra for 4 months and getting a little discouraged.
    Reply to this
  • 12/26/2010 11:31 PM lisa wrote:
    I have been on Ampyra for 2 weeks and noticed improvement in walking and less fatigue Third week developed severe mid back pain and ended up in the ER on Christmas Day.Tests all came back normal.I wonder if it could be the Ampyra? Anyone develop severe back pain that does not get relieved by over the counter meds?
    Reply to this
    1. 3/11/2011 1:25 PM Diane wrote:
      I have been taking Ampyra since the second week of sept..i started with lower back pain in Nov.and have had it ever since...i am thinking of stopping the Amprya and see if it goes away,,,,,,,,,but not sure if you have to wean off of it ,anyone else experincing this?
      Reply to this
  • 1/5/2011 7:50 PM Robin wrote:
    Thank you for this website! I have been on Ampyra since August. First of all, I was glad to see I was not the only one who was left without a refill for a few days due to the insurance company runaround and could hardly walk at all because of it. That is VERY scary. It showed me it really works, though. But, secondly, I'd like to say that I searched out info which got me to here because my walking was not as good yesterday as it has been since I started taking the Ampyra. After reading all the posts on here, I decided I'd better see if it was due to inactivity. I've had the flu, and spent four days on the couch with my new Kindle. I didn't move around much. So, yesterday, I got on my stationary bike, and last night and all day at work today, I've been doing some weight strengthening exercises. Thanks to that, my walking is pretty much perfect today! So, to the people who sound like you need the Ampyra AND some physical therapy, THANK YOU!! I think you are right. We can't take the pill and not follow it up by taking advantage of all the things we can suddenly do again. Walk, stretch, exercise. It is SO worth it! Thanks again.
    Reply to this
  • 1/15/2011 10:01 AM Georgia Eaton wrote:
    For anyone interested: I have secondary progressive ms, 6.5 on DDS. Started Ampyra 8/5/10. Some bad side affects, but no comparison to ms side affects. Just voluntarily stopped this medication on 1/10/11 because there was absolutely no benefit other than the amphetamine like upper it produces. Insomnia and ambulation are not the same things and one was very bad for the other. I think it made me worse. After 2 years of chemotherapy that also made me much worse, this is just another heartbreaking dry run. Thank you and good luck.
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  • 1/16/2011 7:14 PM Raymond wrote:
    I am not an MS patient, however, I have interest in learning more about the efficacy of Ampyra.

    It appears to me from reading the comments, that patients that combine Ampyra with physical therapy get the best results.

    This does seem to make sense. If you haven't used a lot of muscles for a long time or maintained proper posture or walking gate than muscle soreness should happen with increased activity. For example going from sitting/slouching in a chair a lot to standing up can be a lot of work for the back.

    Wish you all the best.
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    1. 1/18/2011 4:42 PM SLH wrote:
      I agree with your observation - I'm sure it depends on the individual, how long you have had MS, how long you've had any degree of disability but I think you are right in thinking Ampyra plus PT gets good results.

      It kind of makes sense that if you have not used a muscle (in my case my whole left side), you need to re-train & strengthen those muscles. I fit the description of improper posture, strange walking gait - pretty much let my right side do all the work best it could.

      I've been on Ampyra coming up on six months & doing PT for about 5, I have seen improvement - but as Ampyra literature describes "gradual improvement" & "a period of adjustment". I'm trying to help Ampyra do it's job and retrain/strengthen my muscles to better accept the messages coming from my brain. An over simplification I'm sure but my muscles are probably asking "You said to do what?"

      I'm not giving up & feel those of us with MS will have to exercise to neutralize the effects of MS the rest of our lives, I'm excited to have Ampyra to help me in my quest to walk as good as I can in spite of MS.
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  • 1/19/2011 2:29 PM Paula wrote:
    My husband just received his rx today and faxed it to the pharmacy benefit manager specialty pharmacy. I'm a bit confused - will the drug come from the drug company or our mail order dept.
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  • 1/19/2011 2:37 PM Jenel wrote:
    It comes directly from the specialty pharmacy, you can not get it anywhere else.
    Tell your husband good luck!
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    1. 1/25/2011 8:21 PM paula wrote:
      Anyone willing to share what their co-pay was for this drug? $125.00 CVS/CAREMARK
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  • 1/25/2011 11:54 PM Theresa Gallarzo wrote:
    I have been on Ampyra for 3 weeks almost one month I take one at 6:30 A.M. and the other at 6:30 P.M.I have noticed a change in my walking am not hanging on to walls and things as i did before I started Ampyra I feel its doing something for me, hope for more improvement. I do us a cane when I go out I would like to not use it hopefully soon. over all i have a lot of hope.
    Reply to this
    1. 2/5/2011 12:36 PM VJ wrote:
      Hi Theresa,
      If you don't mind, may I ask if you have been diagnosed secondary progressive. And, taking the med at 6:30pm are you experiencing insomnia?
      Take care and continued good luck with Ampyra. VJ
      Reply to this
  • 1/26/2011 7:15 PM Theresa Gallarzo wrote:
    Hi Paula i would like to share what my co-pay is its 35.00 a month
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  • 1/27/2011 3:55 PM ms wrote:
    Gave up Ampyra? Invested in this and have some product left on the shelf? Then you migth be interested in a refund: e-mail ms2002live@gmail.com for information.
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  • 2/2/2011 8:21 PM VJ wrote:
    I am a MS patient with trigeminal neuralgia and wanting to try Ampyra. Ampyra enhances the electrical conduction down the nerve, probably because the electrical signal is working better which would increase the trigeminal neuralgia pain. But then as the nerve works more normally, the pain MAY improve. Is there anyone with trigeminal neuralgia that is also on Ampyra? If so, what have you experienced? Thank you.
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  • 2/7/2011 12:55 PM Theresa Gallarzo wrote:
    Hi VJ I don't mind answering your question I have relapsing remitting ms and taking the med. at 6:30 and not experiencing insomnia and if I did it would be fine cause I don't go to bed till 10 11 so I think those times works out good for me. So your not on Ampyra yet? well I hope you get a change to try it and it works for you good luck. Theresa
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  • 2/7/2011 4:28 PM Theresa Gallarzo wrote:
    Hi this is for anyone that can answer my question, is there anyone one on medical/Medicare for this med? reason being my husband Job will be moving to Arizona at the end of March he will no longer have that job so I will have to go on medical for the time being I'm kind of scared i will not be taking this med and go back to were I was would like your in put. Thank you Theresa.
    Reply to this
    1. 8/21/2011 12:19 PM Holly wrote:
      It depends on your state, but I'm in New England, and that type of insurance will pay for it, just requires the preauthorization paperwork from your neurologist.
      Reply to this
  • 2/21/2011 4:41 PM Ron Gardner wrote:
    I'm not on ampyra yet. The comments made by other people have helped my decision making process. Thanks, Ron
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  • 3/9/2011 2:36 PM RodBarker wrote:
    I've been taking it for probably 6 months. I thought I was walking better. I missed a dose yesterday, big mistake. I'm definitely walking better...
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  • 3/9/2011 5:19 PM SLH wrote:
    I agree, I missed a dose on purpose because I got messed up on my schedule & I could really notice a difference but some of these commets about not being able to get off it worry me. It was quite a project getting my insurance to continue my prescription after 6 months.
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  • 4/25/2011 10:01 AM cindy wrote:
    I started Ampyra two weeks ago and am doing very well. No peaks and valleys like with 4AP. Insurance company reached out to Acorda for co-pay assistance so I get it at a low cost.
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  • 4/26/2011 12:05 PM Vicki Newman wrote:
    I started on Ampyra in October of 2010. The same month I was diagnosed with Primary Progressive MS. I have never liked taking prescription medications but due to how bad my balance and ability to walk had become, my husband and I decided to give it a try. My experience has been less than positive. Within the 1st couple of days I developed vertigo so badly that I had to lie flat for 48 hours. If I moved, I threw up. That passed and my neurologist said I must have had an inner ear infection??? Now, I have read on several blogs that temporary vertigo is a side effect of Ampyra. During this time, my MS symptoms seemed to be getting worse continuously. My walking speed did increase but so did my spasticity, headaches, back pain, cognitive issues, new numbness in my hands, arms and face, speech slurring...I discussed it with my neurologist on 2 separate appointments and the only thing she kept recommending was either the addition of steroids or a more in depth 5 hour MRI of the brain, thoracic and cervical spine. Out of desperation and to see if the MS was indeed progressing, I agreed to the MRI. $18,000 later, the MRI was inconclusive and did not show any dramatic increase in lesions. I was rather confused as to why my symptoms were increasing if the disease itself wasn't. I don't go to physical therapy but I do yoga, Qi gong and meditation along with some core strength exercises on a regular basis. By a fluke, I was having problems with insurance and my prescription was delayed. I was out for 3 days before it arrived. At first, I started having severe muscle cramping in my legs and back that lasted for over 12 hours. It was fairly miserable but then it just stopped. Over the next couple of days, I also noticed that the headaches, slurred speech and numbness in my hands and face were going away. The best part is the lack of back pain! I assumed my back pain was due to the weird way I walked and loss of core strength to support myself. I have been going to a chiropractor trying to get adjusted enough to lesson the pain. The pain is completely gone after 4 full days without Ampyra! I feel better than since before I was diagnosed. I will not be going back on the Ampyra, it obviously didn't work for me. My biggest frustration was why did my dr. never bring up the discussion that my symptoms could be related to a side effect of the med? I will be asking her that at my next appointment. Just a side note - I see a lot of people posted that they also use Nuvigil. I was prescribed that also but it gave me severe anxiety attacks which I have never had prior and my blood pressure went up to 162/115. My GP gave me a prescription for a beta blocker. I never filled it. I decided to stop the Nuvigil and within 2 weeks my BP is back to 116/64. I am using Amantadine now and don't seem to have the side effects. It's so interesting why something can work so well for some people and not for others. The human body is a wonderous thing!
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  • 8/19/2011 5:44 PM Craig Baxter wrote:
    it doesn't work for me. my walking has gotten worse.
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  • 9/9/2011 12:43 PM Diane wrote:
    i got off the Amphrya......doing better,,,,,,,also,,,,,seemed to be doing worse on the Copoaxone..was walking allot better before i started that
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  • 12/19/2011 7:27 PM AJ wrote:
    I had high hopes for Ampyera as I have RRMS and it is getting worse. Could transition to SPMS. I started taking Ampyra and for the first week didn't see any change. after four weeks, i noticed a lot of cramping. after six weeks i noticed a degradation in my walking. The drop-foot started to materialize and caused me to trip and fall. SUX! Also, I developed a cough that wouldn't go away. Felt like a dry cough, no production, just annoying. I saw my neuro who told me to STOP taking Ampyra. Apparently I am part of a group of people that are negatively affect by Ampyra. Theory has it that I will go back to my pre-Ampyra days after two to three weeks. That is the hope, anyone else experience the save things?
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  • 1/21/2012 11:23 AM Mary Thobe wrote:
    Ampyra is a new medication that I am taking and am looking forward to seeing the results and to follow everyone testimony.
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  • 2/17/2012 8:52 PM Fern Isbell wrote:
    I have been taking Ampyra since Oct 11 and have been having problems with my chest. Been checked for all the heart things with nothing wrong. I dont know if I should stop this in case it is not working with the rest of my meds, it was great for the first month but I am back to using my cane and really bad leg pain. After going through all the test and finding out nothing I am ready to quit all the meds.
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  • 4/6/2012 6:04 PM LORI wrote:
    I have been on ampyra for alittle over 3 mo. I would say my side effects pretty much mimic that of 10/27/10 post from Conaan. Guess i felt super funky- foggy headed , sleepy,AND headache (very strange, slight but seemed to always be there,around my temples. I didnt want to give up because i did notice a difference in my walking speed and getting up steps, RIGHT AWAY- i didnt feel it changed much from 1 pill, then to when i took 2/day. after discussing w/ my neuro. he suggested i go back to 1/day just to see. i felt like it made my walking WORSE , just a slight change maybe? but i went back to (2/day) after about 4 days.
    IM now considering going back to 1/day -just take a bedtime because i'm trying to weigh the pros & cons- of maybe walking 10% better, vs. STILL being slightly foggy headed and i feel OUT OF IT and sleepy, hard to function really- but i do. I think people prob think i act strange too because im always thinking about that slight/dizzy- foggy head of mine.
    I dont know if its worth it;( giving up a clear mind just to improve a few steps?? Im not taking my a.m. pill tomorrow, will see what happens this time and maybe i should keep a journal.
    Im glad to hear some folks have NO side effects and ive heard it working miracles for many. i was hoping for 25% improvement but really mine was 10% ,maybe and i still feel WEAKNESS /balance issues on my left side. Im wondering too if i my ms was getting worse. like a lady (above) posted, her mri was 'ok', no new lesions, no activity but MS was worsening. that's ME. I had been doing 'well' - very active NO walking prob's at all for 13 or more years, so this disabilty thing is fairly new to me and i would have to say totally depressing Its hard to accept . .........Lets hope for new drugs (better) and a CURE!!!
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  • 4/7/2012 5:16 PM Stephen wrote:
    I took Ampera for 1 month in June of 2010. Sadly, I was part of the 66% that did not have positive results.
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  • 5/18/2012 5:47 PM Richard wrote:
    Do NOT take Ampyra... I've had MS for eight years. After having my MS under control for two years—no exacerbations—I was in super shape, working out regularly and doing bike rides of 40-60 miles. I got greedy and tried Ampyra a year ago. It almost immediately started my body tingling and made me more wobbly in my walk. I stayed with it for three months, hoping I would get better, but instead I felt worse. Then I got hit by its #1 side effect—a urinary tract infection. I stopped taking Ampyra but I've been on a steady decline ever since, despite no new lesions or evidence of exacerbations. My neuro doesn't know what to do. Meanwhile, I can't exercise anywhere near the level where I was a year ago. I've been on my bike only once in the last six months because I've felt so rotten. Look at reviews on WebMD and other sites. There are many more negatives than positives. This drug should not be on the market!
    Reply to this
    1. 10/31/2013 8:13 PM Missy wrote:
      Things seemed better at first but after about 3 months, my legs are worse than they have ever been. Don't know if I need to go to one dose a day or totally quit.
      Reply to this
  • 8/21/2012 8:40 AM Tiffani curtis wrote:
    My husband initially did well on the ampyra, and could actualy pick both feet up when walking, butnow it just seems to have stopped working. I was wondering if anyone else has had the experience.
    Reply to this
  • 10/10/2012 7:36 PM Faithinmylord wrote:
    Hi My name is Faith and I started on Ampyra a week ago. Not good for me. I am walking better for sure, but the side effects are aweful. Waves of sickness, insomnia, skin burning, dixxies and feelings of being crazy. stress easily and anxious. I read all the post and it seems most people did ok for a while but then stopped. I can deal with the not walking for the trade off of side effects. I am going off of it and I feel this site has helped to know that maybe it will be rough at first. I have been recently DX> with Chronis progressive and was desperate, but I want to feel better so I am going to forgo the ampyra and clean my system again and deal with the loss as it comes and do it with gladness and joy. Thanks for all your post here. It helped alot. Faith
    Reply to this
  • 11/14/2012 9:35 PM Anne Seibright wrote:
    My son is 46, MS for 10 years gradual deterioration in walking, but this year , really bad, some days he has to crawl about. Ampyra is still costly in Australia, but PBS is being considered. It seems promosing from your comments...Any improvement would be something. He is still using a crutch, but probably should use a chair....just cannot yet ! He feel like he needs to at least try Ampyra, just scared it might make him worse. It look from you comments like it is abot 50/50 in favour/against it's use. Annie
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  • 11/14/2012 9:40 PM Anne Seibright wrote:
    Can Ampyra be taken with Rebif injections?
    Reply to this
    1. 11/18/2012 8:48 PM Jenel wrote:
      I started taking it with Tysabri, but then switched to Rebif with no problems.
      Reply to this
    2. 4/14/2013 8:02 PM Ampman wrote:
      Yes. It is not an interferon or a disease-modifying drug. Just helps the nerves conduct better. Does not work for everyone. I think they offer a free 2-month trial to see if it works for you. Ask about that. Works for me - can walk twice as fast and twice as far.
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  • 11/18/2012 10:56 PM Robin wrote:
    Hey, Annie. Yes, taking Ampyra while on Rebif is fine. I did it for years. I love my Ampyra. I can definitely tell when I have forgotten to take it. I can hardly walk when I do that. Definite change when I do take the forgotten pill. I hope if your son takes it, he does as well with it as I have. And good luck to you. I know you must worry like crazy about him.
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  • 4/14/2013 8:08 PM Ampman wrote:
    one more thing for my preceding reply.
    I have been taking it for a year. Still notice when I forget to take it.
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    1. 7/6/2013 5:19 PM Sharon wrote:
      Is Ampyra still helping you walk better? Has anyone who started this drug stopped and started again with good results? Around a year ago I took it for several months. I had several UTIs and it also made me feel rather sick all of the time. At times my leg was easier to pick up. I am frustrated by my inability to walk without a cane even with weekly PT. However, I am concerned that Ampyra might make my condition worse.
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  • 4/14/2013 8:46 PM Annie wrote:
    Hi Robin, Ampyra is still very expensive in Australia ( don't know where you are) In the past week I have heard that there is a generic Ampyra that is available and people are already taking it...it works out at about $30 a month. My son can barely walk with 2 c/crutches and is very unsteady on his feet...uses a wheelchair occasionally and is purchasing a small scooter thing soon. You commented in regard to taking Rebif & Ampyra together..."I DID it for years" what do you mean DID it....have you stopped Rebif or stopped Ampyra. Did you have any issues (side effects)on Ampyra....are you still taking it. Do you have RRMS or SPMS.....or PPMS. Thanks for talking Robin...Annie
    Reply to this
    1. 10/11/2013 12:09 PM Robin wrote:
      Annie, I think I left out a couple of answers. I am still on Ampyra, I have no side effects from that, I do have side effects from Tecfidera but have recently learned how to manage them, and I have relapsing-remitting MS. October 15 will be 20 years since diagnosis. Tecfidera is capsules, not shots, and it was initially only tested for RRMS, but I've heard they are doing some testing for the progressive forms of the disease now. So, it may work just as well on progressive forms, but they just don't know yet.
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      1. 10/11/2013 3:01 PM Robin wrote:
        Annie, my correction reply to you showed up on the website after my first reply. I guess I didn't quite reply correctly, so I hope you can find it further down the page. For some reason, I just got notice today that you had replied to my very first post. I'm sorry! I would've written back right away had I known. I received today three replies that were posted to me months ago. Don't know why. I hope you're son is doing okay.
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  • 4/20/2013 5:23 PM Faith wrote:
    Hi my name is Faith,
    And I wrote a post on Oct. 10th. I would like to actually retract what I had wrote, only because my doctor talked me into doing Ampyra for once a day and then go to twice a day and it worked for me. I am very happy with the Ampyra. I am glad that she encouraged me to continue. It has given me a much better quality of life. I can definately tell when I miss a dose or a few days. I have never missed it on purpose and only once. But when I missed putting it in my pill dispenser for over three days. I couldn't figure out what was wrong with me. I realized I had missed a few days. I was a mess for sure. It took only a day or two for it to begin working again and i am doing great on it. I have been able to work out again and walk in the parks and through the grocery stores. I was at a crawl before and used a scooter and felt very fatigued and limited. Now I don't. I have notice it helping every area of my body, not just legs. It's been great! I take copaxone and none of these drugs should have and probloems with one another. I have also been dx. last year with chronic progressive and I feel better than I have in years inspit of the transistion of dx. from R/R to secondary progressive. Good luch to you and I hope this encourages you. Best to you. Hugs faith
    Reply to this
    1. 10/11/2013 1:18 PM Robin wrote:
      Faith, that is so good to hear!! I'm really glad Ampyra is helping you too! That is awesome. Enjoy your walks!!
      Reply to this
      1. 10/25/2013 8:08 AM faith wrote:
        Thanks Robin This has been great! I know it has been working for more than walking. It works on all areas for me that are not working properly. It makes sense to me that that would happen. Conductivity needs to go to other areas also. Have a great day.
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  • 9/2/2013 2:17 PM marian ashley wrote:
    Had MS for many years. Have taken every shot and now am trying the Ampyra. I have been on it for only one week and feel more feeble and on edge.
    Reply to this
    1. 10/25/2013 8:20 AM faith wrote:
      I struggled at first also. Did one pill in AM until I adjusted and then went on two. I feel that our bodies are kind of squirrely because its getting its conductivity back through. So in my mind I feel like it's normal to feel bad at first because everything is trying to work right. I am so happy that I pushed through. I think you will also. hang in there and hope things get better for you. Hugs Faith.
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  • 10/11/2013 11:55 AM Robin wrote:
    Hey, Annie! I haven't heard of a generic for Ampyra. I'm in the U.S. and pay $40 per month for it. I have quit taking Rebif and started on Tecfidera in July. I have just started seeing some IMPROVEMENT, not just reduction in relapses, so I am very happy!
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  • 10/11/2013 1:23 PM Robin wrote:
    Hey, Marian! Don't give up yet!! I think it took about six weeks before my Ampyra kicked in. And I am walking even better now since I started taking Tecfidera capsules three months ago. You might want to check into those too. My vision is also improving!
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