Does anyone take Fampyra and if so what has your experience been? There was some discussion about the drug on here a few years ago and a lot of it quite negative, just wondering if maybe things are better now in terms of the drug’s effectiveness etc?
It works great for alot of people. I know people on it and say it changed their life for the better. I was on a trial for it and thought it worked but it wasn’t for me,I may try it again soon. Lots of posts about it here,just search for it.
Jimmy
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I have now revised my opinion of Fampyra and fully embraced its modest benefits. This was based on the fact that my circumstances changed and felt I had nothing to lose, and also, Prof G has produced no evidence on his theory that it puts too much strain on already damaged pathways.
So, I started taking it about six months ago and quickly became a positive responder. Apparently, the success rate is about 40% and you should be able to tell if it helps within two weeks.
While my range has not increased an awful lot, strength and balance has improved enough to give me an edge and enabled a return to the gym, which is in turn building more strength.
No side effects, but I am generally pretty bombproof in this respect.
Thank you
Thank you for this. Some people who have taken the drug report that whilst they initially had a good response, they felt that coming off the drug left them with less mobility than before they took it, so if they were paying for it which I would be, they were locked in to a spiral of decreasing mobility caused by the drug. Having said that, I guess due to the nature of MS it might be the case that their disease was worsening anyway, regardless of the medication. I’m the opposite to bombproof when it comes to drugs so for me side effects are a constant. I am also a bit puzzled as to why it is described as a medication that can help with walking speed, why not all the other ms symptoms as well since they all have the same cause i.e Demyelination. Love the idea of being able to get back to the gym! Thanks again.
You are spot on and the drug does nothing to halt progression, so if you stop taking it, you just revert back to your old level, plus a bit of interest. Apparently, the drug speeds up transmission of nerve signals and in my case, stability has also improved, together with left hand control.
If you intend going private, then I think it is possible to get a two week trial, which is ample time to see if it works and wish to continue.
Fampridine (Fampyra) | MS Trust
Have you considered the Star MS trial, as an alternative option?
STAR-MS: AHSCT as a first-line therapy for MS (substack.com)
My nurses and neurologist were keen on me to try it a few years ago and I did try it. I just didn’t like the no food 2 hours before and after taking it but went ahead with the trial. I got side effects from it that really bothered me so I just stopped taking it. I felt it did work for walking stability. It was a shame I got the horrible side effects from it but it’s rare to get any. I was just unlucky. It works great for some people and I may try it again soon.