Fampridine (Fampyra)

This link explains the safety record one year on.

http://multiple-sclerosis-research.blogspot.co.uk/2013/05/safety-of-fampridine-one-year-one.html

Hi I have done my trial received a month supply did my trial 25 ft walk completed a fortnight on tablet did not feel any difference in walking speed but did feel quite energetic re did walk and yes it was 40% improved but did not prove to be consistent after further tests. Continued with second fortnight looking for positive improvement in walking speed but alas there was none. Finished supply and went steadily down hill weak legs could hardly walk without aid and help especially outside, confidence gone etc. it has taken approx 15 days to get nearly back to as I was before. I am now going to have a course of steroids to help strengthen my legs. This tablet does work for 1in3 people as I have heard good responses but not for me but if I hadn’t tried I would be still wondering!! Good luck to all. [quote=“Diana Daniels”]

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.

[/quote]

Hello Diana

Although Ive been a member for a few years Ive never really used the forum, upon looking up Fampyra I came across your post, I live not far from you!

After seeng my Neuro yesterday he has suggested Fampyra for me, I am wary but willing to give the free month trial a go, goodness knows how Im going to fund it after !! I hope it is working for you and would be very interested to hear if you do get this for free!

I read a post on here re Fampyra last year and everybody seemed to give it the thumbs up which has filled me with great hope, I have PPMS and use cruthes (Funky ones) no grey NHS ones for me Ha!!!

I dont know if you can link up with people on here but it would be nice to keep in touch as were quite close!

Interested to hear how you are getting on with it xx

Although Ive been a member for a few years Ive never really used the forum, upon looking up Fampyra I came across this post

After seeng my Neuro yesterday he has suggested Fampyra for me, I am wary but willing to give the free month trial a go, goodness knows how Im going to fund it after !! I hope it is works and would be very interested to hear anybodys experiences with this drug

I read a post on here re Fampyra last year and everybody seemed to give it the thumbs up which has filled me with great hope, I have PPMS and use cruthes (Funky ones) no grey NHS ones for me Ha!!! Im really quite excited about starting this in two weeks although I bet Im one of those it doesn’t work for!

I would really like to hear anyones experiences good OR bad, I read someone mentioning possible seizures “yikes”…

Looking forward to hearing from you xxx

Hi,
I’ve been on Fampyra for 2 months now. It has changed my life. I could stand up for about 5 minutes before my leg muscles told me to sit down!

Now, I can stand up for at least 40 minutes, if not more.

My walking speed has doubled.

I did have some stomach pain, but this passed off after a couple of weeks. I still get good days and bad days, but mostly good days - or even (fingers crossed, touch wood) great days!

My neurologist was so happy for me. He couldn’t stop grinning!

I don’t have migraines and have never had a seizure, so my risk factor was low.

I also have more sensation in my right leg, which had very little nerve conductivity with the evoked potentials tests and those were done in 2000.

I really hope you have great results as well.

very best wishes,

K

Hi,

I’ve been taking Fampyra for about 4 months now and it’s greatly improved my walking speed and my energy levels. The only side affect that got to me at first was constipation but changed my diet a bit to get more (even more!!) fibre in it.

I’m very lucky in that work have decided to foot the bill…seem to think i’m a valued member and wanna keep me for as long as they can. There is no way i could afford it if they didn’t pay…sooo lucky really!!

Hi there!!! I know you from our other forum, nice to see you here, Im new really ( I will message you)

REALLY encouraging to read your post indeed, hope it works for me like it does you, fingers crossed!

Thats lovely of your work to do that for you, you are very lucky keep up the good work!

I know 1 guy on it that I go to the mssociety physio classes with and he only told me recently he was taking it for the last 3 years.He walks fast and can walk for longer than me and he is nearly 20 years older than me.He said its v.good and wouldnt do without it.My neuro said im perfect for it but I cant afford it, im sad as id love to take it.Apparently it works best for people with spinal lesions like me and that guy.Sad day, wish the NHS and HSE would fund it, it works from what ive seen

Yes, I’ve been taking it for 10 months - it has improved my walking. My neuro issues a prescription which is filled by BUPA and costs me £190 every 4 weeks. My MS nurse submitted and individual funding request which was rejected - the decision making seems completely irrational. I went to see my MP about it, and he wrote to the appropriate minister, who advised that I speak to my neuro…
I’ve decided to wait and see what the new NICE guideline says when it is published this autumn.
Good luck, I hope it works for you and that you are able to access it without a problem.
B x

I’ve been taking the drug for nearly 18 months now and it has made a huge difference to me. My legs are stronger, my heat tolerance much improved and my ability to stand up ( in a queue for example) is much better. For me I noticed an improvement within 2 days of starting. I do not have the Branded Fampridine Rather the raw drug made up into capsules by my pharmacist (4 amino pyridine). I live in Belgium and the branded tablets are not available as the local health insurance body decided the drug company is charging too much. No problem to get capsules made up. Costs me about 50/60 euro for 2 months supply. I had a staggered starting dose ( 5 mg once day for 1 week, 5 mg twice day for 1 week up to current dose 10 mg twice day and 5 mg once day. Dosage based on your weight to ensure you don’t take too much and risk seizures . When it works for somebody it can be a life changer. I have had ms for 22 years now

It’s been a miracle drug for me. I take it first thing, before a cup of green tea and last thing after a milky drink.

I went back to work. This has made me so happy.

I could stand for about 5 minutes on a bad day and walking was very, very slow.

After the 2 week test, my walking speed doubled and I can stand for an hour.

I’m so pleased to be earning money again and paying taxes and NI contributions.

I think that NICE made a big mistake with their ruling on Fampyra.

I’m not working full-time yet, but I hope to be near to that by the end of the year. That’s just due to lack of pupils rather than any problems that I have.

I don’t have to pay for the Fampyra. I’m also very thankful for that too.

1 Like

I take it in the middle of the morning, at about 10:30am and then around 10:30 in the evening. I generally take it with no drink at all (probably not ideal) but sometimes I have it with hot chocolate.

It cut the time it takes me to walk 10 metres by a third, down from 12 seconds to 8, when I started on it 2years ago. Unfortunately my walking has got a lot worse in the meantime, but it is still better when I am taking Fampyra.

I did take it at 7am and 7pm but I found it really disturbed my sleep doing ithat. Some people are fine doing it that way.

Be warned that it doesn’t work for everyone and some people get bad side effects with it.

1 Like

I have been taking it about 6 months ish and it has helped walking speed and strength/balance. I take it at 6am and 6pm with a little water. There is no problem with the morning empty stomach but I have been known to give in to a sweetie or two from 4pm … but never a meal!

The drug has proved a much needed positive for this PPMSer and I hope it does for you too.

I take it around 7 - 8 am and again 12 hours later, and don’t always take it with liquid/food - I’ve had no problems. It is slow release and a high dose should be avoided, in other words, the doses shouldn’t overlap. I asked my neuro about the fact that in the US and Holland (I think) people are having the active ingredient made up into tablets by pharmacists (at a fraction of the cost) - he told me this was dangerous as the dose needs to be released slowly. It definitely works for me and has speeded up my walking, I also get fewer cramps when swimming.

I cannot understand how NICE has worked out that it isn’t cost effective… Lapreguicera, do you mind telling me how you don’t have to pay for it?

Thanks

Bouncy

Hi Bouncy - we were buddies on the old site!

I moved to northwest Spain.

My neuro asks for funding each March for various drugs and he managed to get funding for Fampyra. I keep muttering ‘Lemtrada’ at him, but we’ll have to wait until after the funding meeting.
He has patients who’ve been on beta-interferon since 1997!

It’s a small hospital, small autonomous health system (just for Galicia) and very few incomers. I do feel less guilty about staying on Rebif and having Fampyra, but now that I’m working, I feel so proud to be able to pay into the health system.

He has a lot of patients with dementia - the population has more over 80s than the UK and they stay in their homes until they finally pass away at about (on average) 96! It must be all the various forms of kale that they eat.

saludos,

K

xx

It was me who asked the recent question about taking Fampyra. Thanks for all your help folks. It was my first post on the forum and it is so good to know there are others “out there” i can talk to.

1 Like

To Bouncy. It is not dangerous taking the made up capsules. Before starting, your daily dose is calculated according to your weight and then it is split in 3 with minimum 4 hours between each tablet. My neuro has been prescribing me this for some time and prescribing to others for many years. He actually prefers the non timed released formula and if the drug company ever lowers its price enough for the Belgian medical system to allow reimbursement of Fampyra he would still prescribe me the generic capsules. Think it depends on what doctors are used to and in the UK it is not really common practice for medications to be ‘made up’. Dangerous though it definitely isn’t. ( only if I decided to take 2 10mg capsules too close together then I would be at a higher risk of a seizure, no different if 2 Fampyra tablets were taken too close together)

Hi Ginsozzled, thanks for your response. Yes, what I meant by dangerous was the increased risk of a seizure if tablets are taken too close together. I would love to have the tablets prescribed as oyu do - but I detect that you don’t live in the UK? I’m not sure how I would go about getting tablets made up in the way describe, here in the UK - do you (or anyone else) have any idea?

Thanks again

B

Hi lapreguiceira

Yes of course I remember you, and the fact that you are living in a delightful part of the world with an MS friendly climate! Sounds like things are going really well for you (MS notwithstanding…), and it’s great that you are getting satisfaction from working and paying into the system (amongst other benefits). I too am working - pleased to be able to and enjoying the job. Of course my pay helps to fund the £190/month for Fampridine.

B xx