Forum

ampyra

hi all im going on my annual visit to myneurologist soon and was thinking of seeing if i could get to try ampyra foremely known as fampridine

i was wondering if anyone has any experiebce of taking it good bad or whatever

cheers

andy x

I tried Fampyra/Ampyra a couple of weeks ago as part of a trial being run at my hospital. Unfortunately, I had a bad reaction to it (fatigue, terrible neck & head pain, nausea, burning + freezing + pins & needles in my legs, drooping right eyelid and difficulty walking) so was taken off it after taking only 3 pills. It was pretty scary, but I felt much better the next day and there have been no long-term effects.

I think my experience is not typical though. When I took the rest of the pills back to the hospital, the nurse said that everyone else was fine on it, and was doing well.

I hope it works really well for you.

Karen x

cheers for the reply karen,sounds like you reacted badly to it. what a shame, but glad you recivered quickly

hopefuly il get few more experiences then decide.

even iif i do ask,i suppose itl be downto cost

andrew x

Presumably your friend found someone to prescribe it, or gave up, a while ago. But just out of interest, I was prescribed it by Dr Chataway at the National Hospital for Neurology and Neurosurgery. I got a second opinion about my MS from him, on the NHS. But I have to pay for the Fampyra (amprya) myself. It’s really expensive but has changed my life

Presumably your friend found someone to prescribe it, or gave up, a while ago. But just out of interest, I was prescribed it by Dr Chataway at the National Hospital for Neurology and Neurosurgery. I got a second opinion about my MS from him, on the NHS. But I have to pay for the Fampyra (amprya) myself. It’s really expensive but has changed my life

I’m lucky enough to be under the Dudley borough which is the only one which is currently trialing Fampyra on the NHS. I have been taking it for two weeks now and feel a definite improvement in my walking, balance and energy levels, with no side effects. I went for my walking test today (timed walk before starting the tablets then again two weeks later, if no improvement the tablets are stopped) and my walking was faster and smoother.

I am very happy with Fampyra and I hope it is soon available to everyone who might benefit from it.

What is Fampyra? Just wondered is its DMD? X

Hi Sewingchick

Dr Chataway gave me a prescription at the National a week ago, saying a free trial was not available and the cost would be around £160.00, although Ive read on here its more like £400.00. Anyway, the pharmicist from the National called for me to pick up the script and told me it would be £542.00. Is this right? Really want to try it but was shocked at price.

For Lisalou - no, it’s a “walking drug” - actually a drug that improves how the messages are transmitted between nerves. The drug company has done the (expensive) tests which show that it improves some people’s walking, but hasn’t tested it on anything else. It has improved all of my symptoms but the improvement I have seen is a bit up and down. One place you can get it on the NHS at the moment is in Dudley (see above). I think you have to pay everywhere else and it is about £430 for a month’s supply.

I have contacted the MS Society about campaigning to get NICE to consider it but really what we need is NHS doctors doing trials to show that it helps other things as well as walking and that it’s worth the £350 a month that the NHS have to pay for it.

Aah I see…daft if it makes a difference why can’t they make our lives easier by providing it … Frustrating for those who need it. X

I think Dicksons Chemist sell the stuff and might be worth getting a quote from them.

http://www.dicksonchemist.co.uk/Home/Default.aspx

Hello

I’ve just finished the free trial of 1 month’s supply and had a timed walking test before starting the drug and after taking it for 3 weeks the results were pretty amazing, The time was 50% faster than the time before taking the drug. My consultant agreed that I should continue. I’m just waiting for the new batch to arrive which means I’m now without the drug. My walking has already deteriorated which is annoying but also reassuring because it reaffirms that I should be taking it. I’ll have it in a few days which is a relief. As well as my walking being easier and quicker, I felt less tired, my balance and bladder improved too.

Shame about the cost of course, £182.00 for a month’s supply but I’m prepared to pay if it works. I’ve had no awful side effects either so I’m confident of the future at last…

Tina xx

I’d be interested to know who your neurologist is. Am guessing you are from Morecambe. Do you see a neurologist at Lancaster, Preston or do you go to the Walton Centre. My experience at both Lancaster and Liverpool is that whatever I sake for has been refused, usually fobbed off with some excuse or other. I’d also be interested to see if you get it.

Hi, I have been taking this drug for nearly a year now and it works for me. As well as better walking, my heat intolerance is also better. The thing with it is you have to keep taking it. If you miss a day the drug is totally out of your system within a day and there is no residual benefit. I am in a different situation to most of you as I don’t live in the UK anymore and here in Belgium the system works differently. We have to pay upfront for all medical stuff and then claim back a percentage from your health insurance (compulsory but very cheap for everybody). Fampridine has not been cleared by medical insurance here as the company are charging too much for it BUT it is perfectly easy for me to get a prescription for capsule to be made up for me at chemist with the active ingredient. Pharmacist buys large jar of 4 amino pyridine in and makes capsules for me. Costs me about 65 euro/month (about 50 pounds). I love the effect it has had for me. The first 10 days were hard as I built up from 5mg a day to 25 mg a day. Within an hour of taking capsule felt sick, faint dizzy and unable to stand. Passes within 20 mins. After about 2 weeks this stopped and I no longer have any side effects. Horrible to see the narrow minded view back home that this drug should not be supported by NHS. For the 30% it works for it is brilliant.

Fampyra seems to be a bit of a mystery.

I was put down for a trial in mid-2012 - heard nothing more - enquired and got a vague answer - then found that no PCT in the South of England would fund it. An NHS trial in the North-east had concluded it was not cost effective at about £400 a month.

I have just seen a report by NHS London (dated 2013) saying much the same thing and quoting about the same cost.

The mystery is that last year, Dicksons Chemists were quoted on this forum as supplying for around £220 a month, with BUPA and Healthcare at Home both getting under the £200 mark. At the same time, Biogen increased the free trial from 2 weeks to four. so we have to ask if this is a story of clumsy marketing by Biogen Idec, or if there is something a bit odd in the NHS procurement setup?

My MS nurse and a neurologist were both happy for me to “go private” for Fampyra, but the side effects put me off. And, as tinawilliams0911 has found, if you stop, the effect wears off very quickly. The 30% figure for those who benefit is a bit of a red herring. It has been published that about 30% have such side effects that they do not complete the trial period. Another 30% or so have no improvement at all, and of the remainder, only about 30% have a big improvement in walking speed - so really, only about 10%-11% get a real benefit.

I think that if you can walk at all without aids, it could be well worth trying. For me, with dropped foot, an FES and a 3-wheeled walker get me around OK and I do not want to jeopardise that mobility. Someone else with more mobility to start may need the extra walking ability, so theirs will be a totally different decision. But you do have to ask why the NHS seem to be against an improvement in QOL, for the 10% who do well on it, if the cost is really only about £200 a month.

Geoff

There was an article in the news section of this site a month ago saying that NICE have been considering whether Fampyra should be funded and are provisionally saying no. They don’t want input from the MS Society on their decision, which sounds like the final decision will be no funding for Fampyra.

Actually the article is the last thing on the ‘related items’ section on my screen at least.

Hi, I’m looking for a new neuro since [name removed by moderator] retired from UCLH in London. Now nominally under a locum. Any London recommendations please? Is Chataway easy going? Many thanks