I have been taking Fampyra for just over a year now, and noticed the benefits. I also notice how bad I feel when I miss a dose.
However, I visited my neurologist yesterday, and he wonders how much effect it is having now. He suggested stopping it for two weeks to see how I feel, thus saving me £190 a month.
He suggested that I persevere for the two weeks and not just draw conclusions from the first day.
This morning the spasticity is awful though.
Has anyone else been on Fampyra for any length of time and then stopped?
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Morning!
Yes only recently I stopped to check out what’s what. I did 5 days without but deteriorated so much I wasn’t prepared to go any longer without. I wasn’t prepared for the lack of strength physically or mentally and I cannot comprehend how the NICE (?) guys perceive that Fampyra isn’t cost effective for some …but somehow I will continue to pay for this drug myself.
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l noticed on the Biotin for Progressive MS group - that quite a lot of people take Fampyra - and many take Ampyra - which is the same drug but does not have the ‘time release’ - but is much cheaper then Fampyra. lt can be bought - with a prescription from GP - or a private script- from pharmacies in Europe who will post it to you. lt is much cheaper to do this way.
l was tempted to try it - but read reports on the MS forum that once you start it is difficult to stop - as it causes a deterioration in MS symptoms. So l am too frightened really to try it.
l will look to see exactly how much it is.
I clearly fall into the “difficult to stop” group!
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Just looked up one of the ‘posts’ about ampyra - 4AP - from a lady who gets her Biotin [made into capsules] LDN and 4AP sent from a pharmacy in ltaly. Alberto Paggi. 6 months worth of 4AP costs her £77. She was previously paying £180 a month.
Hope this will be of help to you.
I got 4-AP from skipps in Florida. Tryed it for 6 months,it did absolutely nothing even with the dose ramped right up. Researching it further, its used as chemical to scare birds away from airports, it doesn’t actually poison them or kill them , just gives them a bad taste and they choose to feed elsewhere.
I broke open a capsule or 2 and put it on my tongue and basically it tingled like a sweet without the sweetness then just went away after a minute or so. So I stopped taking it and am now really sceptical it does anything at all , mind you I didn’t eat at home for a while after taking it lol.
I’ve now come to the conclusion that all of these additives, drugs biotin the lot do pretty much sod all and I’m probably better taking a couple of anadin extra and a large brandy every so often !!
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When you look into what some of these drugs contain - it can be frightening. l believe it is Tecfidera - that is used as a wood-preservative. l had heard about fampyra being a ‘bird scarer’.
What l find very ‘scary’ - is the way people with MS - are enticed to start taking Fampyra by their GP’s/Neuro’s because the manufacturers offer a months free trial. Then they find they have to keep taking it because when they stop their condition is worse then it was before starting.
This is ‘drug dealing’ at its worst.
All these ms drugs are shite. Any benefit is always eclipsed by a side effect. Comes down to which way you want to feel sick, by taking a drug or not taking it.
large brandy and a couple of headache pills is better and cheaper than any of these stupidly named drugs !!
Makes me sick just to think that a whole industry has been created around one disease, bogus drugs administered by bogus specialists charging fortunes for bull shit basically !!
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Well said nw1… Yes yes and yes!!! 
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