Forum

Fampridine (Fampyra)

Has anyone tried this new drug which is supposed to help us to walk better? I have a month’s supply which I started Weds 25th July (it will be a week tomorrow morning). I haven’t noticed any improvement in my walking yet. I am feeling a bit dizzy and have a bit of a stiff neck, but I think that’s all. I would love to hear from anyone who has tried Fampridine and what results you have experienced.

Hi Diana, I tried Fampyra for 3 months at my own expense(£400/mth). It didn’t help me walk but it gave me much more energy and I wasn’t so heat intolerant whilst I was taking it. The only reason I stopped was the cost. Andy

Hi Diana, I am going on it next week so I will let you know how I get on…Paddy

Hi Diane, My consultant says I’m ideal for it (Walking with two crutches now). But no funding at the moment? Awaiting news from PCT on that one? So please keep us informed on your progress. Hope it works for you. Christ x

Is there not a trial going on at the moment by the company that will fund it for you at least for a month or two.

Bump … Cos I would like to know too Sue

My Neurologist thought I would be able to get the first months supply of Fampridine free on the NHS. Then he found out that the NHS wont pay and there’s no telling when they will because of funding cutbacks. So I decided to do it privately for a month. It cost me £385 but at least I will find out if it is any good for me. I am on my 12th day now. So far no improvement in my walking, not sure if it’s slightly worse. Anyway, will keep going and hope for an improvement.

It is a funny situation.
The makers of Fampyra offer the first month’s supply for free, so the only cost to the NHS is that of staff time. What may happen privately, I cannot say.
There is an “assessment”, which is really a matter of how fast you can walk over a given distance, and an evaluation of the risk involved.
Then comes a two week supply of tablets.
Then you go back for a new test over the given distance.
No improvement means that it stops right there.
Substantial improvement (whatever that is) means that you carry on with Fampyra - provided the PCT of the body that replaces them will approve. (Do I hear the words Post Code Lottery here?).

The whole thing must be supervised by a practitioner experienced in MS (rules out most GPs). There are some suggestions that it may have an adverse effect on the nerve fibres over time anyway

The Fampyra licence is for one year only, and is due for renewal this month.

So, a NO from the PCT can kill the idea, a NO from the European Licencing people can kill the idea, and a NO improvement in two weeks can kill the idea. Diana should not have been given a one month supply, and what should be done if there is no improvement real soon now, is a matter for her - but she should talk to whoever supplied the tablet.

And, YES, I do have an interest - I am on the “maybe” list for Fampyra at my Hospital. I have already decided that the prospect of two good years with greater mobility, are worth the possible side effects and the possibility of long-term deterioration in the nervous system. If it is offered to me I will do the trial. If I were much younger, I may not have come to that decision.

Geoff

Dear Docter Geoff

I did have the walking test before I got the Fampradine. I have to go back to my Neurologist for another test on 16 Aug, which is in the 3rd week. By then I shold know if the pills are doing me any good and if I want any more. I live in Taunton, so don’t know if it’s the wrong post code to get the pills free.

Di

I gues that the Neuro is being slightly flexible with the two week trial, Diana, but you are getting a few moredays to see if there is any improvement. The two week limit is set by the manufacturers, so your Neuro is maybe giving you a day or two extra.

But, do let us know how it all works out. (I don’t know about Somerset either)

Geoff

I live in Ireland and my situation is a bit different. I had an appointment with my Neuro last week and he told me that he was going to try me on this new drug called Fampyra that was supposed to help with my walking. It was being given as part of a trial that the manufacturer was doing and if it didn’t work it would be stopped. He gave me a prescription for a month didn’t do any walking test and told me to ring him to let him know how I got on. I’m starting on it on Tuesday. As its not funded over here either I’m not sure whats going to happen when the month is up. I presume if I want to stay on it I will have to fund it myself which is unlikely to happen as I wouldn’t be able to afford it. I’m surprised to learn that two weeks is the limit set by the manufacturers and that I was given a months dose.

My MS team won’t prescribe through trial as there is no agreemant as to who will fund after trial. From what I can gather the PCT is also awaiting info from the drugs company (further trial results?) before they will agree to fund locally. Don’t know if the MS society could put pressure on the company to move thing along a bit? (I’m in Wales).

My MS team won’t prescribe through trial as there is no agreement as to who will fund after trial. From what I can gather the PCT is also awaiting info from the drugs company (further trial results?) before they will agree to fund locally. Don’t know if the MS society could put pressure on the company to move thing along a bit? (I’m in Wales).

Here is a link to the NHS NET5reatment Advisory Group report on Fampyra

http://www.netag.nhs.uk/files/appraisal-reports/Fampridine%20in%20MS%20-%20NETAG%20appraisal%20report%20-Mar2012.pdf

The following is a quote from the European Medicines Agency. It does make it clear what sort of improvement is expected before one can say the it works:

Two main studies were performed comparing Fampyra with placebo (a dummy treatment) in 540 patients with multiple sclerosis. The patients were treated for nine or 14 weeks. The main measure of effectiveness was based on improvements in walking speed along a path of 25 feet (about 7.5 metres). Patients were considered to have responded to treatment if, on at least three out of four occasions, their walking speed was faster than their highest speed before treatment.

The issue of funding does seem to be very local at present.

Geoff

Just started 3rd week of Fampridine this morning. No improvement in my walking so far. I think it has got a bit worse. Still feeling dizzy too.

Hi Diana, How you feeling? Any improvements with walking yet? Look forward to hearing your news? Chris

3 weeks and 5 days on Fampridine and my walking has not improved. I was thinking of cancelling my Neuro appointment on Thursday nd stopping taking the pills, but have now decided to carry on with it all. Don’t think I’ll be wanting anymore pills though. Can’t see me having any improvement when the 4 weeks is up. Just hope my walking goes back to what it was before, which was better than it is now.

So sorry to hear that Diana, Was hoping that it gave you improvement. I’d stay on till you see your consultant it’s only few days. Keep us posted on his thoughts and how you get on thursday. Chris x

I took my last Fampridine/Fampyra at 5pm last night. That was 3 weeks and 2 days from the start of the 4 week course. I saw my Neuro at 5.45pm and told him I thought my walking was worse. I did the 25yard walking test again. The time taken was 11.1 seconds. Before I started te pills it was 9.5 seconds. I told him about the side effects (dizziness, sleeplessness, balance worse). He told me to stop taking the pills. He told me that only 1 in 3 people find an improvement. Looks like I am not one of them. Hopefully I will soon go back to my previous walking ability.

I am glad I tried the pills, but disapointed they didn’t work for me. The only good thing is that I don’t have to pay for anymore pills.

My Neuro has 5 people on the pills. I am only the second to have the 2nd walking test so far. The first one he tested did have an improvement and carried on with the pills.

Good luck to anyone else who tried this.

Diana

Thanks Diana for posting about your experience with Fampridine, it was helpful to know.

I hope you recover quickly from the side effects