saw a new consultant today, what a breath of fresh air. he asked questions and took an interest in answers. he said if i can walk 25mtrs i can try fampyra. i need to sort trigeminal neuralgia first to come off amitripyline, seeing a private specialist monday for that.
That’s great Joy!
Hope it goes well with the specialist on Monday. Let us know what happens,
Fingers crossed for Monday Joy, hope it goes well for you.
good luck mate, i asked about fampyra for walking and my neoro laughed and said too expensive!
Good luck Joy, I’m waiting to hear if I can start it…hope to know on the 23rd. Hope you are one of the 36% of responders. Would be extremely interested to know how you get on. Best wishes, Nina
Cool, I to saw a new Consultant and said she was hopeful I could try Fampridine! That’s one of the reasons I have been quiet recently, good luck take care guys, M
is it available on prescription now? i’ve read about it and think it could help my walking & maybe my bladder but when i asked the nuero he sort of grunted/laughed and said £2000 a year… too expensive
Ben, from what I’ve read, if they think you’re a responder you get a free 1 month trial and after that you have to pay and it is around £200 a month… I don’t think there’s any way to get it on the NHS in the UK
I ask my GP for a trial of this: GP says… ask your MS Nurse. MS Nurse says… speak to your GP. Going round in circles I say… i’ll buy it off the internet then. GP says… you dont know what dosage to take. I say… WELL GIVE ME A TRIAL THEN I’LL KNOW !!!
Hi Dave, Not sure if it’s totally correct or not but my GP told me that the free months trial can only be instigated by a consultant! Best wishes, Nina
i will have to pay but i might get on a trial, change consultant if they wont help. i did.
My Consultant says she will try and get Fampridine for me by the end of Nov. watch this space…
Have you searched the forum for threads about ‘Fampyra’ in order to give you some background based on actual experience of trying this medication?
I know Fampyra has been tried by several MSers and results seem to be a bit inconsistent depending on how long you’ve had MS, what other medication is being used, how MS affects you (not just walking) etc.?!!
Took me a year of asking specialists, saving up for a private consultation and then finally trying the drug to achieve very lacklustre results!
In my personal experience, perhaps I had unrealistic expectations, but the very small benefit simply didn’t justify the cost and my walking has now been severely affected after the trial !!
I’ve read about quite a few people who’ve responded really well to it but when they’ve stopped taking it their mobility has changed quite drastically for the worse. It might just be that negative experiences are published more, I’m sure doctors and research must have seen benefits or they wouldn’t prescribe it, but I’m a bit wary. Don’t want to put you of it frighten anyone on it but I’d definitely research results. I’d love to hear positive feedback from people who’ve responded to it well.