want to stop fampyra

Everyday living
1

i want to stop fampyra what do i do, how long before withdrawals stop please

2

hi joy

i have no idea because the cost of fampyra put me off trying it.

i’m glad now that i wasn’t able to try it.

which doctor put you forward for it?

i would ask that person for advice.

carole x

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3

Hi Joy

Or talk to your MS nurse for advice.

I remember hearing about it and asking my neurologist if I could try it. He just said it wouldn’t help me, so that was that. I’m so glad I couldn’t get it now.

Such a shame, it seemed like a fabulous drug. But with so many problems.

Best of luck with it Joy.

Sue

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4

Hi hi Joy,

ive been taking Fampya for 2 years now. I’ve missed pills from time to time and I suspect the effects last 12 hours as the patient has to take 2.doses Per day.its not a long lasting drug.

if I Miss a day then I know the next day with snail speed legs.

5

I started by missing one dose, to see if my disturbed sleep improved (it did). I then took just the morning dose for (I think) a few months. Then my sleeping got worse again and I stopped the Fampyra completely. My walking got quite a lot worse but I started sleeping properly again and that was more important to me. I did try Fampyra again a few months later but even taking the morning dose only disturbed my sleep, straight away.

My understanding is that you can stop Fampyra without anything much happening, apart from losing improvements in function that you’ve seen. Is there something particular that you’re worried about if you stop?

6

getting worse for a few weeks would be ok but i wouldnt want to lose leg strength

7

Hi Joy

I have ummed and arghed about fampyra … I stopped completely for a couple of weeks, went to one tablet a day for a couple of weeks but have returned to two a day for a while …speed of walking is irrelevent …I have no speed!..but I feel stronger on it thus able to do more which I guess is a plus …

no major problem when stopping as such, certainly no withdrawal, just felt more feeble …hope whichever route you choose is good for you …

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8

Any deterioration you see coming off Fampyra is likely to be permanent. But you might deteriorate while on Fampyra because of the drug. Here’s a link to the (well-respected) website that suggests this:

http://multiple-sclerosis-research.blogspot.com/2015/01/clinicspeak-fampridine-trial-results.html