Hello…I have SPMS and currently walking on crutches for short distances. I would like to know more about Fampyra and how to get it and if anyone has used it. I use LDN at the moment which is working well for me but would love to have an improvement if only with my walking speed or using one stick instead of two. Any info would be good many thanks Tina W x
Fampyra is an odd case, Tina. It was first offered on a “first two weeks free” trial, but at a price where every PCT in the South of England refused to fund it. I was on a list for a trial, started researching it, and was glad when it was dropped. I asked about it a few months ago - the hospital were quite keen to “support my interest”, the deal is now 4 weeks free and then it will cost about £180 per month.
When I asked, I was walking with two sticks and an FES for my dropped foot. The list of side effects put me off (I seem to recall our old friend rizzo having to drop out of her two week trial after less than a week) and the success rate is not very good. You can take a figure of 9%-10% getting a reasonable improvement as a guide. But, those in that group that get a good improvement are pleased with that improvement.
I have, however, heard that those who stop will lose all the improvement almost immediately. There is a second point. The action of Fampyra (look it up also under Fampridine) is to force nerve impulses down nerves that are damaged, but not just the damaged ones. Nerve impulses will be forced down perfectly good nerves as well. It only finished Clinical trials 5 years ago (with FDA approval 2 years later), so no-one knows what (if any) long term effects will arise.
The quick answer has to be: your body, your call. I figure that it is not for me.
I know four people who took this Rizzo well she tried it for a week and gave her migraines etc and stopped
2 other people took it and has still been on it for nearly a year I personally not seen any improvent in their walking speed etc
and their cognative and speech has always been ok.
The last person is wow she was all over the place could hardly walk just shuffle to the loo spent days in bed or on sofa has serious speech issues and as she described being in la la land and really not with it.
After first week things slowly came back, I think shes been on it for 5 months now ans she is walking about more normal can brew some coffee and serve it for me sit on chair for computer and just move about with no stick or crutches.
she order hers from somewhere in Scotland I believe as it was alot cheaper than going locally.
I did read up on Ampyra and found a paper (study) saying long term use with speeded axons in the nerves could lead to nerver burn out and possible speeding up the bodies degrading with MS. In other words it accelerated the MS process.
Also if you have any kidney problems you should not take it, it can leed to increased risk of UTI as well.
My friend knew this as I warned her she still went ahead and glad its really working. As Geoff said if it works and you stop things go down hill.
Anyway the free trial is 2 weeks you should get some idea its working at the end of that.
Thank you Doctor Geoff and Hobs for the info. I don’t want to risk losing the abilities that I have and as I work both as a Nurse Advisor and as a Parenting Tutor, need full use of my hands, eyes and other faculties. Given that I have been termed as a ‘non responder’ to both Betaferon and Copaxone, starting something new that has given others significant side effects, sounds like a non-starter to me. I too have used FES with good effect, along with using an electric cycling machine. I feel I will continue with more physical exercise and with LDN in the future. I’m very glad I had your advice. Happy 2014 from Tina x