Ampyra Did Not Work, Walking Much Worse
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I took Ampyra for 9 weeks--twice a day for one week but the insomnia was so bad my neurologist took me off for 1 week, then 1/day a.m. for two more months, but walking was worse, not better, I thought possibly because I was getting so little sleep Since stopping it 8 weeks ago my walking has gotten significantly worse. Over the past several years, my MS has been stable according to MRIs with walking deteriorating very slightly, but after stopping Ampyra, walking and balance are significantly and increasingly worse. I hope my MS has not kicked up again after all these years.
In addition to insomnia, the most significant side effect was terrible stomach pains, way beyond the "indigestion" listed in the side effects, and I lost several pounds I didn't want to lose. That pain ended immediately after I stopped taking Ampyra.

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Re: Verwon (# 1) Expand Referenced Message

I also took ampyra and are walking worst than before.
Heres my story
I started ampyra on may at the same time i started studying for a big test- i also have a herniated disc and suffer from episodes of lower back pain- but it was manegable always. As the weeks passed i started getting lower back pain- eventhough i was stretching and walking a little almost every 45 minutes- i was aware of the tension to my disc that being on the same position gives, so i did all i had to do to prevent it. The lowerback pain keep scalating to the point that a week before my exam i went to my neurologist- he checked me and told me i was having a relapse- but the ampyra never crossed out minds- maybe just the stress and the heat had trigerred it- so he gave me solumedrol- no improvements, the day of my licenseture exam i went to take it with a cane. After my exams I got an mri to see if it was a flare up, it showed no new lessions or enhancements. I stopped the ampyra at this moment.
A few days later with an awful pain I went the pain managemnt clinic and got a nerve blockage (2 weeks ago) the pain alliviated a bit for a few days, now its scallating again, im using my cane 60% of the time, cause i fear falling and also to be in a better posture

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38

I took this drug to improve my walking with MS well now I cannot walk I cannot stand not very happy

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37

I started Fampyra in July this year. I didn't notice any good progress but decided to stay on it for a while. However my balance has been off and my legs feel heavier as the days, weeks, months progress.

I take it once a day as I find it hard to fall asleep if I take it at night. I missed a dose last week and found that I couldn't walk without it! This meds is like an addictive drug. I can't function normally without it, and feel a lot worse if I missed a dose.

Overall, I find my walking was a lot better before I started on this drug :(
For those who had stopped the drug, how long did it take till you are back to pre-Fampyra condition?

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36

After 10 weeks on Fampyra my walk has worsened. I'm ready to quit.

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35

A few years ago I was talking Amphera for about a year it was free. But then I was notified they wasn't about $900 per month. So I elected to go with out it. I do not walk well but rather walk as I do the spend the money for a drug that might work. So I haven't taken Amphera for 6 years now and after reading these comments I wont ever try it again.

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34

Hi, my name is Brenda and I too have primary progressive MS. Initially when I started Ampyra it seemed to help but as I continued things have worsened with my balance walking and weight gain. I have started to ween myself off medication so I can get back to exercise and feeling better. About to turn 55 next week and have had ms since 2004. Sounds similiar

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33

I am in the middle of weaning off Fampyra as after an initial good result time, I've been declining, very rapidly. Good stuff is on the horizon though, ,,!

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32

Hi Pat. I don't have time to read through all these comments so I don't know if anyone has given you the correct answer- you CANNOT just so taking Amypra. It will make you incredibly spastic, as you know. You simply need to scale down off of it. In other words, take 3/4 of a pill 2x for the days, then 1/2, then a quarter... etc. You made need to cut down less than a quarter of a pull at a time, but start taking ur Ampyra again & scale off of it & what you ate going through will stop.
I need to scale off of it 2x a year so it can become effective again. Other than that I have had great success.
I'm sorry your doctor didn't tell you this. It's irritating to me when docs prescribe something they are not educated on.

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31

Ramona, do you know if their has been any discussion regarding reporting Ampyra to the FDA? With all these people taking it and ending up worse rather than better, it seems it should stop being marketed as a drug to improve walking for patients with MS. In fact, I've never heard of anyone being helped by it, except in the first few weeks. I did, in fact go to the FDA website, and explained what happened to me. I'd encourage anyone to do the same if you've had these problems.

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30

I am still having problems walking. Problems.....but the hardest effect only lasted a month or so ..after I stopped taking amphera. Amphera, worked well for me, when I was taking it. But the pain I had after stopping the medication was not ever worth restarting it again. I was unable to move from the waist down, even the slightest, without pain. I was unable to move fast. It took so much effort to move, even the slightest bit. Not to mention, PAIN nonstopping. But what happens if one cannot afford it any more? And crash stops??

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29

I just found this site today July 18, 2015. I hope some of you are still checking in. I started taking Ampyra about 3 years ago, and by the time I was thinking I would go off of it, I kept hearing people talking about getting so much worse when they stopped completely. For the last year I have been taking it once a day, w/o any noticeable problems, but nothing positive either. I am afraid to go off of it completely, because I feel I might get worse. Did they ever do a long term study of this drug? How can they make these claims of it improving walking, when so many people have the exact opposite experience?

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28

There Is a Side Affect of AMPYRA, in which I wanted the company to hear. I was sent AMPYRA.. I had no idea how to use it.. I was in the center of a huge MS disturbance ..which lasted almost a yr...I was not able to make heads or tails of the information sent at the time. so.. I just took one.. then continued. The doctor had already taken labs.. The AMPYRA worked Wonderfully... the problem started when the doctor wanted newer labs.

1... I had a mother in law at deaths door, and a mother who was in the hospital almost there as well.

2... There was bad weather time, I even had to sleep at work for a few days. (winter) Ice, rain (turned to ice) and repeated.

3... I had a hard time finding time to meet with sick family. not finding time to venture out on the ice for doctor appointments..or extra labs.. in that ice

4... my trial AMPYRA started running low.

5... I only took 1 a day...to hang on until i was able to see the doctor, and then found out he wanted more labs....but the doctor, lab...and the insurance were unable to get the information together in a timely manor.. so that even with my repeated calling for the medication.. i was told that they were waiting on the insurance. The insurance and the doctor were waiting on the labs.. so none of the paperwork, was making it at the right times to wherever that they go.

6... When I slowed down to 1 AMPYRA a day, my legs, up to my hips, felt like they weighed a TON... very slow to move... pain was unbearable.

7... When I had to stop taking the med.. due to the fact that I had ran out... the pain.. and the same result happened again... Missing days at work in both processes.

I NEVER Want to feel that pain again... I never want to feel like I am dragging 3 tons of weight from each leg, while attempting to walk.... after not taking this pill.

AMPYRA... Does WORK.... but your doctors has to be on top of everything.

I just wanted the AMPYRA Company to know of this side affect... I feel it is important... hard to want to take it again.. after knowing what can happen... But even harder to want to go back to not being able to walk, like a person.

Any Answers for me..? Any others who had my problem?

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27

Wow, this has been a welcome read as I started ampyra 3 weeks ago and have felt no benefit only a worsening of symptoms. I found the insomnia and dizziness went away after the first week, but I have had crazy needles and pins in my feet all day and night and I feel my legs are weaker so my walking is slower. Its disappointing, but I am only starting week 4 of the 4 week free trial so I am just going to stop taking it and pray for recovery. Nice to know I'm not alone, thanks everyone for posting.

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26

I too wished I had never taken Ampyra. But so glad I came off and did it cutting the dose in half (not cutting the pill) just the dosage to once a day over a week. Then none. As they say, never cut a pill in half as the coatings are there to allow a more gradual release. Cutting a pill can cause too much too soon and thus a seizure. I hope you find as I have, that after a few weeks, you are back to your previous condition and can find other ways to deal with the problems that led to trying Ampyra. For myself it was a regime of leg and arm exercises with weights that I can do sitting or standing with a support at the ready. Sending positive vibes to you. Believe and achieve or as I prefer Use it or Lose it!

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25

Ampyra also made my walking worse. I had horrible lower back pains as a side effect and it greatly affected my balance which of course made walking more difficult. I wish I had never taken it.

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24

You can't just stop talking Ampyra. Your spasticity will go though the roof and you'll hardly be able to function. I learned this after running out overa weekend. Start taking it again the DWINDLE down to nothing.

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23

Dear Sammys mom...I am so better from staying OFF Ampyra for last 9+ months. I have no more falls and I am able to do my indoor exercise program again without sitting, Thus, I have my weight under control and that is so good. Took awhile to get over poor balance from Ampyra which like others, initially helped balance but then caused worsening walk and balance. Hope you get relief without Ampyra. My insurance was covering but I stopped Ampyra and my Neurologist agreed not good to take in my case. I am age 62 with Primary Progressive MS since 2000.

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22

Wow! I was looking at side effects dc Ampyra because of insurance problems. I have been on Ampyra for about 7 years. During this time i have slowly deteriirated with my balance and walking to the point I now use a cane/walker/wheelcha/power scooter and have gone on disability. I have problems sleeping, stomach problems and have gained way too much weight (which I'm sure dosent help). No diet seems to work and I don't have the energy or strength for long food prep. I'm not sure once I get the insurance straightened out if i want to go back on it!!

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21

AMPYRA and Famyra were originally a bird poison used at airports and on farms! Apparently was very effective...at killing birds! No wonder so many MSers get worse eventually if not immediately!

asknicola.blogspot.ca/2009/10/yes-i-know-about-fampridine4-apbird.html

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20

My doctor has taken me off Ampyra/Fampyra permanently after a vision loss and foot drop return. So, I am off for 2 weeks now and hope to get back to where I was before Ampyra/Fampyra. I will do my exercises again standing or sitting as best I can. Good video one person put on YouTube:

youtube.com/watch?v=DJmQ84YqCOE

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