Can Ampyra Make Balance Worse After Stopping Use (Top voted first)

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was able to walk unassisted early in the day but had to use a walker later in the day. Neuro prescribed Ampyra, but when balance issue prevented walking unassisted at all after about a week of use, Dr. said to discontinue immediately. Balance issue continues for almost a year after discontinuing the drug and cannot walk unassisted. Could Ampyra possibly cause some lingering issues, even after its use has been discontinued for a long time?

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1

Hello, DJ! How are you?

I'm more inclined to think it's due to an MS flare, rather than the medication, since it was discontinued so long ago.

The FDA lists its typical side effects as possibly including nausea, insomnia, headache, weakness and stuffy nose.

Are you on any other medications?

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2

Thanks for the response Verwon!

The company (and Neuro) say that "balance issues" is a significant possible side effect of the drug.

Repeated physical assessments (labs, MRI's, other diagnostics) show no indication of any kind of MS activity. Dr.'s are puzzled as to why the balance issue that cropped up concurrent with starting Ampyra haven't gone away. I was just curious whether anyone else may have had a similar experience of some Ampyra side effect being experienced but then lingering and not going away once the drug was stopped.

Thanks again for your response!

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3

DJ, I had a similar experience. Not right away. At first it seemed to help. Than after awhile I was having backaches all the time---spasticity. My blance was also affected, but I had heard so many bad stories about people getting worse when they STOPPED Ampyra, that I was afraid to stop. Eventually I went to taking once a day, in the mornings. My legs felt heavy for a long time, which also doesn't help walking, pain or balance. I think what has saved me through all of this is that I've done deep water aerobics for years, and I just kept going with that, whether I felt like it or not. After almost a year of once a day, I'm now taking it once every other day. I'm not really noticing much of a change, so I'll continue like this until I run out of the RX, and see how it goes after that. I'm praying that I won't get wose and can stay off of it for good. Good luck figuring it out!

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4

Thanks for the response, Susan, and sharing the exercise program you are following. Water Aerobics may be something worthwhile pursuing. Still having to rely on a walker to negotiate any distance other than a few steps.

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5

DJ, I wish I knew! I've been on a very slow weaning off period, because I heard things like your story when people just stopped taking Ampyra all at one time. I took it as instructed for about a year, but when I linked my symptoms to Ampyra, I started to take it once a day. I did this for a year, figuring if it helped my walking at all it would be best if I took it during the day. Now I'm taking it once every other day, and it seems that I'm having less back ache, and my balance issues seem to be improving, as I decrease the use. I may take another month of every 2 days before I quit entirely.

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6

Thanks for sharing about declining use of the Ampyra. I've wanted to stop. Have taken for 4 years. Balance is a big issue. Start to dose once a day to see how I'm affected. Will follow your example rather than quit altogether, at once.

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