Fampyra

Everyday living
1

Hi , just wondering if anybody has tried this ? i had relapse in Dec which affected my legs i now have to use a crutch to walk everywhere, cant walk very far until legs give away and balance is affected . Heard of this and wouldnt mind giving it a try .

any advice greatly appreciated thx

Fiona xx

2

Fiona,

You’ll need to discuss this medication with your Neuro.

Some parts of the UK appear to be able to get this through the NHS, whilst other areas won’t fund it - can only be obtained privately …which you’d have to pay for out of your own pocket (…at least £190 per month!!)

It doesn’t work for everyone, but you can try it for a month free of charge to find out if it’s any good for you.

As I say, best to discuss it with your Neuro first!

Dom

3

hi fiona

try to get it.

i asked my ms nurse for it and was told that it was no longer available for me.

some kind of funding issue.

i was very disgruntled! and to make me even more vexed it also helps with bladder control and fatigue!

carole x

4

I’ve been on Fampyra for seven weeks. I’m 59 and PP. Before I started Fampyra I had bad foot drop and fatigue was so bad that I could only walk, with support, about 25 metres. I thought I’d be in a wheel chair very soon. Anyway, within a week of starting Fampyra, my walking speed doubled and fatigue diminished. After seven weeks I’m still improving, and think that I will soon be able to walk with only a stick (I use a rollator at the moment). I haven’t seen a neuro for at least five years, so I got a private prescription from my GP. It is costing £240 for four week’s supply, although I’ve recently discovered that Bupa will supply the drug for £190. If you can afford it, you must try it for a month. It’s very disappointing that the NHS won’t pay for the only drug that really improves mobility. John H

5

Bump!

6

thanks john H

i never thought of private prescriptions but i’ll get onto it now.

carole x

7

Hi.

I’ve read quite a bit about this drug and the NICE response. As I understand Famprya helps you to walk faster but does not significantly reduce the chance of a fall or the chance of breaking a bone. At the moment NICE does not take quality of life into consideration.

So because there is no proven evidence of improvement of safety, therefore reduced cost to to the NHS it cannot be approved by NICE. sadly everything has a cost & that must be justified.

The unfairness of this has been highlighted especially with regards to MS sufferers. We must wait and see.

If you have footdrop/legdrop think about the Musmate and also looking at Othotics to stop foot drop

Patrick