Forum

Fampyra

Hi

Can anyone who has had success with Fampyra please tell me how long they were taking it before it kicked in? I have only been taking for a week and have an appt with Neuro next week but so far have not noticed any difference. Thanks. Steve.

Hey Steve,

when i started Fampyra they told me 3weeks to kick i…

My Neuro will not ‘do’ a private prescription for me, I wish you luck. M

I was told I would be considered for Fampyra - then my PCT said NO WAY to anyone having it.
I got real interested in it in the beginning.
The original deal was that you walked over a measured distance against a stopwatch. Then you started Fampyra. Then you came back after two weeks and did the timed walk again. If you had no improvement, or only a tiny one, that was the end of it.

From the people I was in touch with then, and the searches I did then, it does not seem to be a whole lot of use. Perhaps one third of the people who tried it showed any improvement, and only a third of those had a big enough improvement to justify staying on it. One or two had some unpleasant side effects, and one person on this forum (graf from Austria, as I recall), got on well with it). I do know that rizzo had to stop it on account of migraine, and others have reported dizzyness.

In the beginning I would have welcomed a trial - now I do not think I would.

Geoff

I am getting on well with it. I saw an improvement in my walking (speed and went from 2 to 1 sticks) after only a few days. Saw walking speed improvement when tested after 2 weeks. My physio has been testing me at the end of each month and I’ve seen an Improvement each time, since October. I think it might be different tomorrow and it’s done as much as it’s going to do for me, which is that i’ve gone from taking 12.6 seconds to walk 25 m to 7.6 to do the same. My doctor warned me that only about a third of MSers see improvement.

I welcome all these comments about Fampyra as my neuro has offered it to me for the 1 month trial and I’m dithering about it. I have a friend on it who feels it has done enough for her to warrant staying on it and paying for it. She says bowel probs, cog fog, walking speed have all improved, side effects only mild.

I don’t know why I’m dithering. Actually I think it is because, mad though it sounds, I’m scared it might work for me and then I have to make the decision whether to carry on with it, and the anger I know I will feel at not being offered a treatment that works on the NHS.

I think there would have to be a massive improvement for me to consider carrying on with it and I don’t think it will give that massive improvement.

Hilary