dmac95 18/09/14
Last reply 3 years ago
FAMPYRA

Hi All
I am being put forward to try FAMPYRA to see if it helps with my walking. Today my MS Nurse asked me if I was still taking LDN as she wasn’t sure if it would be ok with FAMPYRA. Does anybody have experience or know if it will be ok to take both together.

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stumbler
3 years ago

Here’s an old post that discusses this drug and has a reference to LDN too :-
https://shift.ms/topic/fampyra-fampridine/

It may be worthwhile to use the search facility (the magnifying glass top left) and see what other posts there have been for fampyra and fampridine.

You’ll have to let us know how this progresses. I’m very interested, but it seems there’s nothing available for me down here!


dmac95
3 years ago

Thanks Stumbler


dmac95
3 years ago

So here it is 10 days in on Fampyra and all going well with no side effects. Walking has improved a little but energy levels are definitely better and a marked improvement with my left leg which now is not cold all the time. Physiotherapist appointment on the 27th to have my walking measured so hopefully I will have good results. Will update again then.

I’m taking Fampyra and LDN together…….about 5 months now. No problems with them at all. The Fampyra is still working, i think with energy levels more than walking now. Walking is still better no doubt, but not as good as it was initially.


dmac95
3 years ago

1 month of taking Fampyra. I had a timed walking test today with an improvement of 30%. My left leg and hand are now warm all the time and energy levels are so much better and I find that I don’t tire so quick when out and about. Will have another test in January 2015 and they are hoping that there will be an improvement in the dexterity of my left hand.


stumbler
3 years ago

I really wish this country would sort itself out.

NICE have declined to approve Famyra/Fampridine on the NHS. I’m just wondering how you got it, @dmac95 , as I’d like to try a similar approach.

Otherwise, I’m pleased it’s working for you.


dmac95
3 years ago

Hi
I am thinking it’s got a lot to do with having a new neurologist who doesn’t seem to care to much for the powers that be, as there are 3 or 4 people up here in the Highlands now on Famyra/Fampridine. I only hope it is not taken away from me..

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