Dom - Tks for reply. Difficult one here . Have fampyra to take. Appears to affect some people with more than expected side effects. What do I do next - it’s my move ? On a rough ballpark analysis it appears that :- approx 40 - 50 per cent of patients benefit from fampyra to varying degrees. Some substantially . Approx 35 per cent of patients notice little change in their symptoms. Approx 10 - 15 per cent of patients are subject to various forms of deterioration in their symptoms, usually returning to normal on stopping fampyra. Am I being over optimistic ? Looking like I’m going to bite the bullet - will make decision next week. Tks. Tony
I think you’ve summed it up very well, Tony. I have been on this wonderful drug for over four months now. foot drop nearly gone, mobility much improved and fatigue much less. I’m one of the lucky ones !
I took Fampyra (Fampridine) 5 years ago for about six months and stopped (GP retired) . Although I lost all the benefits I simply reverted to my pre-Fampyra status, certainly no worse.
l am looking into Fampyra - again - l do not want Tony to think he is a guinea -pig. Acorda Therapeutics.lnc say that there is a interactive website called ‘Ampyra Journeys’. l did read that improvements are on going up to as much as 5yrs. Slight risk of seizures - this is in people with kidney function problems. So thats why you need to get tests done to see if you are a good candidate first.
Once armed with as much info as l can - l will then mention to my GP - prior to seeing a consultant neuro.
I’m still taking the Fampyra but have deteriorated a lot in the months I have been on it, especially just recently. My walking speed got faster, going from 12.5 seconds for 25m to about 8.5 seconds and has stayed there or thereabouts. My physio does a walking speed test at the end of each month and I will be very interested to see how I am when I do this in a few days because I feel worse. I still don’t have to sleep in the morning (which I was doing before I started on the Fampyra) but I no longer cycle my son a mile to school and then cycle back, since he goes by himself now. My bladder control is all over the place, fine for a while, then poor again. I assume I’m getting worse but I’m not as bad as I would be if I wasn’t on Fampyra. But I don’t really know.
Sewing chick - Tks for you reply. You do not seem to be responding as you no doubt hoped, however you walking speed has improved by 33 per cent so that’s certainly v good. I’m delaying starting to take fampyra as I’ve picked up a bad cold. Probably start over the weekend. Tks Tony
Sewing chick -Tks for comments. Sorry to hear you’re not responding as well to fampyra as you’d probably hoped but you walking speed has improved by 33 per cent which is v good. I have a bad cold so am delaying starting taking fampyra until probably the weekend. Tks. Tony
Sewingchick Fampyra helped my bladder control quite a bit, but try Betmiga . After a few days my bladder has completely normalised. No side effects . Wonderful ’
Sewingchick Fampyra helped my bladder control quite a bit, but try Betmiga . After a few days my bladder has completely normalised. No side effects . Wonderful ’