I’m really glad that you are working too - it is a good feeling. Not so much after 5 hours, but the small amount of money is worth it. My Fampyra costs 451 euros a month - and it’s made in Portugal (where everything is cheaper!).
xx
I’m pretty sure it’s not possible in the UK, which is really a shame as I speak as someone who is so thankful this medication works for me. Lived away from the UK for quite a few years now and despite the fact I would quite like to move home at some point, the healthcare system here is brilliant and I would struggle to readapt to the NHS and all the hoops you need to jump through to get access to appropriate treatment/specialists (not just MS). You make an appointment with who you want, when you want and you don’t have to be referred or wait for somebody else to prescribe things. Always think too much emphasis is put on the timed distance test. For me the benefits are so much more than how fast I can walk a set distance.
Hi all, I have been taking fampyra for about 9 months, and it really improved my walking speed. However over the last couple of months my walking has slowed down to the rate it was before the tablets. I don’t know if this is because I’ve had cold / flu for ages or whether it will return to the speedier levels I had initially. Has anyone had a similar experience. I am self funding this so I need to decide whether to carry on at £182 a month or stop paying.
Can anyone offer any advice ? I would love to hear from you. Thanks,
Hi. I’ve just started taking Fampyra. I was told from the beginning that it is not a cure, nor will it slow progression, but if it suits me it will make life easier in comparison to what was happening. So I assume that things will continue to deteriorate as it would have done, but from a better start point. Only time will tell, of course.
Having said that, I am learning the limitations of Fampyra early. I totally overdid things one day this week and it has taken three days of very low activity to get anywhere near recovery! But a few weeks ago I wouldn’t have even considered doing what I did, so to have the option of overdoing things like that was amazing!! I was clearly expecting too much because I had responded so well.
I guess the same would be true if I had a bad cold or other illness. My MS would be affected by them but hopefully with Fampyra the effect will be less severe because I’m starting from a better point. Finance is always a problem so I understand your concern not to waste money. But neighbours who have had the 'flu bug have taken three to four weeks to even start getting rid of it, and some have had it for a couple of months or more. Do you know how your MS would have responded to your ill-health if you hadn’t been taking Fampyra? Is it better than it might have been?
I’m trying to be philosophical about it and accept whatever improvement it gives me for as long as possible. It has taken me back to where I was about a year ago, and I’m delighted to have that improvement.
I would also be glad to hear of the experience of others who have been taking Fampyra long term.
Good wishes to all.
I have deteriorated a lot in the 27 months I have been on Fampyra - the drug made me better at first but it didn’t last. If I stop taking it, my walking gets worse. One of the neurologists at Barts thinks that the drug causes deterioration. I’m not sure I would take it if I had my time again (but I am still taking it). I would definitely find out if there is any evidence for it making people worse.
I’ve been taking it about 6 months I guess. The initial feeling, as it worked for me, was great - not just walking speed but felt stronger and more steady. Unfortunately the progression continues but I simply must assume that that progression would be more rapid without the drug … with PPMS it was the only hope really.
Thanks for your responses. I don’t know what to do. I guess I will carry on, have another walking test and then decide. I don’t like the sound of the drug making things worse, that’s not what I’m paying for. I thought it was the answer, how naive am I ?
I’m not worse. My MS is not progressing. I have relapses, but that’s it and then I have to recover. My last relapse was in 2012 and as I’ve had MS since 1992 (diagnosed in 2000), this isn’t bad going. I also inject Rebif and it does what it says on the tin (so to speak). reduces relapse rate.
Fampyra has been brilliant for me. I have bad days and good days and use the good days to get fitter.
I think that it’s disgraceful that people have to fund their own Fampyra. However, the costs in the UK are part-funded. My packets of Fampyra cost 430 euros (it’s printed on the packet).
If you aren’t progressing, (only time will show this) then Fampyra is worth a go.
best wishes,
K
Like I said, one of the MS doctors at Barts thinks it makes people’s walking worse over the medium term. Would you really think the NHS should pay for this?
Without this drug I would be really struggling to walk anywhere, climb stairs, stand for longer than 10 minutes and generally pretty useless. When you think of the size of the NHS budget and relatively how few people in the scope of things would be prescribed this. The cost to the NHS is a drop in the ocean. It can change some people’s lives. I’d much prefer the NHS funded treatment that can make a difference than funding gastric band operations and non life threatening cosmetic surgery
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Me too. It gave me the chance to get fitter, which is really important as the bloggers at St Barts wrote today.
[quote=“Ginsozzled”] I’d much prefer the NHS funded treatment that can make a difference than funding gastric band operations and non life threatening cosmetic surgery
[/quote]
You are so right - I’d have tried it by now, if it wasn’t for the cost!!
Sonia x
I started fampridine two weeks ago and am due to see the neurologist in a couple of days. My walking and balance has improved so much that I no longer have to use a rollator or stick around the house. I actually walked around the garden today without any aids - a bit silly but I felt that confident that I could. I am generally feeling much more alert. The only downside is that I wake very early at about 4 - 5 am. I try to read and doze off again so that I get seven or eight hours in bed to rest my legs.
For me, this drug is making a huge difference but I had to ask for it. I was met with a stony response (“Who told you about this?”) but told that yes, there was a trial on at the moment and I would be referred to the relevant team. When I was assessed I did ask about people who were good candidates but didn’t know about the drug - would they be offered it? I think you all know the answer! My region (Bristol) does not provide funding for this drug so I am working out how to manage paying for it when the month’s trial is up.
It’s certainly worth keeping up with the latest research. Everything that has helped me most, from a FES device to ropinirole for restless legs and now fampridine, I have had to ask for. Funding should be available for this drug. I know it does not work for many people but if anyone out there is starting it I can only say the very best of luck.
I am giving up Fampyra now - been taking it for two years, now disturbing my sleep in an unacceptable way My walking is much, much worse than when I started it. I hope that’s not because I’ve taken the Fampyra but I have read stuff saying it could be. The NHS should not fund (or recommend) this drug til proper studies have been done on this.
“Without this drug I would be really struggling to walk anywhere, climb stairs, stand for longer than 10 minutes and generally pretty useless.”
This is a really good description of me now that I’ve been off Fampyra since Tuesday. But I have been sleeping properly and that’s lovely - I feel more philosophical about my poor physical condition when well rested. I think there’s a reasonable chance that the Fampyra has done this to me (speeded up my physical deterioration). There should be more testing done on this drug.
are you going to keep taking it? joy
I’d really like to know whether long term use is damaging - I have now been taking it for just over a year. I don’t think there are any investigations or trials into whether it is harmful in the long term If anyone knows any more about it, please post here!
B
You have probably seen this already, but just in case. Multiple Sclerosis Research: ClinicSpeak: fampridine trial results
My ms has been deemed to be non-progressive. It’s been 15 years since diagnosis this year and if I have a look back at various relapses and recovery, my baseline is the same as before diagnosis. I have pretty awful arthritis in my right leg, but thanks to Fampyra, I have better nerve conduction in that leg.
I stood for 4 hours doing a gig on Friday. I went back to work and this morning I sang in a choir for Palm Sunday. My balance isn’t always great, but it wasn’t great before diagnosis.
I’ve been on Fampyra for 6 months. The link that Whammel kindly posted, does show the benefits and also discusses the risk for progressive MS.
If you aren’t progressing and are stable on whichever DMD (Rebif in my case) then Fampyra can make your life a whole lot better.
If you are newly diagnosed, then it’s worth waiting a while to see if your MS progresses. This can be very difficult to judge.
In my first 2 years, despite Rebif, I was doubly incontinent, couldn’t shuffle more than 10 paces, been in considerable pain, unable to read books, play the piano or sing. It wasn’t until nearly 8 years after diagnosis that my new neuro gave me his opinio that my MS isn’t progressive - well not yet!
For Joy - no I’m never taking it again (and I wish I had never taken it in the first place). It’s good if people can take it long term without seeing ill effects. But I don’t think (after reading Whammel’s Bart’s blogspot post) that it’s anything to do with whether your MS has been progressive in the past. For some people at least, the Bart’s doctor seems to think that Fampyra causes progression, at least in walking deterioration. A horrible idea for those of us who have been taking it for a while and seen lots of deterioration …