# Frampridine

**URL:** <https://forum.mssociety.org.uk/t/frampridine/34056>\
**Category:** Everyday living\
**Created:** [30 August 2020 16:00 UTC](https://forum.mssociety.org.uk/t/frampridine/34056 "2020-08-30T16:00:12Z")\
**Posts on this page:** 14\
**Page:** 1

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**Author:** ![jactac](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/jactac/32/2604_2.png) [@jactac](https://forum.mssociety.org.uk/u/jactac)\
**Post date:** [30 August 2020 16:00 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/1 "2020-08-30T16:00:12Z")

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Just curious if anyone has tried Fampridine, and if so what was the outcome ?

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**Author:** ![goldrat](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/goldrat/32/1020_2.png) [@goldrat](https://forum.mssociety.org.uk/u/goldrat)\
**Post date:** [31 August 2020 10:54 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/2 "2020-08-31T10:54:17Z")

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Hi Jactac

I’m on n Fampyra, same thing. Tablet taken every 12 hours to improve walking.

Private prescription about £200/month. Free in Scotland and Wales.

Given 4 week trial. Neurologist timed me walking a set distance. 4 week trial then timed walk again. 2nd time a little bit quicker but more importantly I wasn’t falling down!!

Have been on it 3 years. Tried 1 tablet a day for a while but walking was so much worse.

No noticable side effects.

Put Fampridine / Fampyra in the search box top right.

Hope my answer helps.

Jen x

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**Author:** ![jactac](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/jactac/32/2604_2.png) [@jactac](https://forum.mssociety.org.uk/u/jactac)\
**Post date:** [31 August 2020 11:17 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/3 "2020-08-31T11:17:40Z")

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Hi Jen

So your walking was worse with this drug ?

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**Author:** ![Bertie](https://avatars.discourse-cdn.com/v4/letter/b/9de0a6/32.png) [@Bertie](https://forum.mssociety.org.uk/u/Bertie)\
**Post date:** [31 August 2020 12:18 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/4 "2020-08-31T12:18:19Z")

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Hello Jen

How do you buy it

Bertie

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**Author:** ![goldrat](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/goldrat/32/1020_2.png) [@goldrat](https://forum.mssociety.org.uk/u/goldrat)\
**Post date:** [31 August 2020 17:44 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/5 "2020-08-31T17:44:09Z")

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Fmpyra is only used to improve walking speed.

My walking was quicker and safer, as I didn’t trip!

Neurologist prescribed it. As I said, I got a months trial then started paying.

Gets delivered to my work every month as it has to be signed for.

The pharmacy phone me up and book a delivery slot, I then pay, then they deliver.

Decided that I’d use it if it was free and lucky enough to be able to afford it.

NICE turned down the funding for it which my neurologist didn’t understand.

Just ask your MS nurse or neurologist.

Jen x

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**Author:** ![jactac](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/jactac/32/2604_2.png) [@jactac](https://forum.mssociety.org.uk/u/jactac)\
**Post date:** [31 August 2020 21:21 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/6 "2020-08-31T21:21:12Z")

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Sorry, thought you said that you tried 1 tablet daily for a while but your walking was so much worse.

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**Author:** ![goldrat](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/goldrat/32/1020_2.png) [@goldrat](https://forum.mssociety.org.uk/u/goldrat)\
**Post date:** [1 September 2020 19:33 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/7 "2020-09-01T19:33:52Z")

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Sorry, yes.

My walking was bad. Improved and no tripping with recommended 2 tablets per day twelve hours apart.

1 tablet a day sometimes is enough to improve walking but I tried 1 and didn’t work , standard dose is 2 tablets per day which I reverted back to. Walking not brilliant but not tripping and falling so it’s worth it.

Jen

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**Author:** ![jactac](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/jactac/32/2604_2.png) [@jactac](https://forum.mssociety.org.uk/u/jactac)\
**Post date:** [2 September 2020 14:55 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/8 "2020-09-02T14:55:00Z")

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I’d like to try it but at the moment I’m on the MS study trial for Simvastatin with 18 months left to run, so I doubt the consultant would add another drug as it might interfere with the study ?

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**Author:** ![jimmyk1](https://avatars.discourse-cdn.com/v4/letter/j/c4cdca/32.png) [@jimmyk1](https://forum.mssociety.org.uk/u/jimmyk1)\
**Post date:** [4 September 2020 20:33 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/9 "2020-09-04T20:33:36Z")

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I tried it last year, 1st month was free. I took it for a week and stopped it. I didn’t like the side effects. I did notice I was walking faster and smoother. I know people that say it’s very good and have been on it for years. Jimmy

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**Author:** ![jactac](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/jactac/32/2604_2.png) [@jactac](https://forum.mssociety.org.uk/u/jactac)\
**Post date:** [4 September 2020 21:22 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/10 "2020-09-04T21:22:00Z")

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On my next assessment I’m going to ask if I can try it.

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**Author:** ![jimmyk1](https://avatars.discourse-cdn.com/v4/letter/j/c4cdca/32.png) [@jimmyk1](https://forum.mssociety.org.uk/u/jimmyk1)\
**Post date:** [4 September 2020 21:40 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/11 "2020-09-04T21:40:34Z")

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You get a 4 week trial and they only measure walking speed but most people get other benefits from it too. It doesn’t work for everyone but you might have good results. Sadly I didn’t like it and kinda regret it now but il manage without it.

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**Author:** ![jactac](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/jactac/32/2604_2.png) [@jactac](https://forum.mssociety.org.uk/u/jactac)\
**Post date:** [5 September 2020 07:38 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/12 "2020-09-05T07:38:17Z")

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What were your side effects ?

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**Author:** ![jimmyk1](https://avatars.discourse-cdn.com/v4/letter/j/c4cdca/32.png) [@jimmyk1](https://forum.mssociety.org.uk/u/jimmyk1)\
**Post date:** [5 September 2020 21:04 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/13 "2020-09-05T21:04:08Z")

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I seem to be 1 of the few that got side effects. Everybody I know who took or is still on it had no side effects. I think I quit it too soon to be honest as i actually felt my walking improve very quickly. I had a sort of tingling feeling in my legs which I didn’t like and I felt anxiouso ( never had that feeling before). I regret not goin ahead with it. You will like it and if it works for you it will make you think why isn’t the NHS paying for it. Best of luck Jimmy

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**Author:** ![Wien](https://avatars.discourse-cdn.com/v4/letter/w/b5ac83/32.png) [@Wien](https://forum.mssociety.org.uk/u/Wien)\
**Post date:** [9 September 2020 21:06 UTC](https://forum.mssociety.org.uk/t/frampridine/34056/14 "2020-09-09T21:06:32Z")

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I take an equivalent to this, my chemist makes up the capsules for me. After all they studied drug composition and effects. My chemist makes up the capsules for me.
