I know this is not funded where I live, but has anybody taken Fampyra? If so did it help and I know it’s expensive but what is the cost? My MS Nurse has told me about it and I have got to make a decision if I want to try it. Help!!
I take it, having originally taken a 4 week free trial (funded by the drug co) by the end of which you’ll know if you respond to it. I did - so have to fund it myself. They use walking speed as the indicator that it works or not but I really think that sells the benefits short (the cynic in me would suggest that that is NICE’s preferred analysis to avoid funding!) It helps with balance too and I fall a lot less and feel stronger.
I hope the trial works for you. It is expensive but until the powers that be deem it worth funding I am prepared to live my life restricted by money rather than movement!
eek forgot to say - it is £190 for 4 weeks tablets from BUPA!
hi, i take it, doesnt help walking but makes my legs stronger and my core, also think clearer. joy
I took it and although it helped my walking massively the side effects that I had were so bad that I preferred walking badly!
hope it helps you,
Nina
Just waiting on a delivery from the states of 4-AP, the same ingredients as Ampyra, not a timed release tablet but an immediate release instead. Ive done loads of research, apparently the yanks, who have been taking this for years ,take up to 40mg a day and there is annecdotal evidence that the Ampyra dosage we take here may not be enough.
Ampyra is 2 doses of 10mg each. So I have 90 x 5mg and 270 x 10mg and the idea is to gradually ramp up the dose to find the level Im comfortable with bearing in mind not to go over the 40mg/day that by concensus of opinion is the safe tolerated dose. This should last me 3 months and has cost £106.
I have read somewhere that the shelf life of 4-AP may not be very long after I had ordered it. So it may not last the full 3months. Problem is the shipping cost is more than the cost of the drug, hence the reason for ordering a large batch.
If it works for me I’m more than happy to share a delivery with someone else it works for in the future. Here is a good source of information and is backed by other opinions Ive read.
www.thecompounder.com/alternative-treatments/multiple-sclerosis/4-aminopyridine
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Will be interested to hear if it helps. I’d be frightened to take anything else on top of all I currently take. It might help someone here though.
Cath x
Just a question Min, what ARE you taking ? If you have ppms , theres virtually nothing that works !
Would like to know too, nothing I take is working yet.
Sorry, I’m not taking anything specifically for ms but I suffer with nerve pain, so I’m on a bucket load of pain meds and other drugs for my symptoms. Because of them I’m very reluctant to add any thing else, as I don’t know how they’ll interact with each other.
The reason I wanted to hear about the results from people on drugs for ms is that if they had any significant improvement I’ll speak to my Neuro about them. He’s already told me that I’ll need my painkillers for life but I’d love someone to find something that would be an alternative as everything I take has side effects and over time won’t do my liver any good.
Cath x
Oh ok . Sorry to call you MIN when your names Cath . From what Ive read on 4-AP/ Ampyra it sometimes helps people with spinal cord damage and MS sufferers where the nerve damage is predominantly spinal cord rather than brain. It acts as a potassium blocker , the main conductor of electrical signal down the nerves. The idea is it blocks potassium from leaving the cells in the k2 channels where the nerve is damaged from scarring to the myelin sheaf, it can temporarily ,as long as it is taken, act as a replacement to that myelin, thus improving walking speed.
Heres the rub, if the above is the case, why doesn’t it work on everyone to at least some extent ? Are the improvements of quicker walking by 25% reported by 40% of people taking it just normal fluctuation ? The timed study is over 25 ft , so if you could barely walk at 1mph and then could walk at 1.25 mph its well within the realms of normal fluctuation but would it be reported as a success !
Apparently there are other benefits as well, legs feel stronger, foot drop better and the feeling of needing a pee everytime walking is attempted go’s.
I’ll report back on this over the next 3 months when I get the tablets. x
Thanks for that NW. That’s even more interesting now as I’ve suffered a spinal cord injury at C5/6 that required surgery and now we’re not sure which of my symptoms are caused by that and how many by the ms. Please do let us know how you get on as I might enquire about it when I see my Neuro again. And I answer to both Min and Cath, no offence taken x.
Cath x
Hi Cath
i to suffered with chronic lower back pain. Last Easter I tried facet joint injections, they where fantastic, the first time in 20years no back pain. But unfortunately it was short lived, 4 weeks
in July I tried a 2nd course, these did it act quite as well but lasted a lot longer, approx 4 months
3weeks ago I had radio frequency treatment, which burns the nerve hopefully permanently ( relatively painless)
once again I’m pain free, unfortunately this does away with muscle spasm where apparently we get a lot of strength from
so I am going to investigate this drug as apparently it regains strength in your legs
Hi A.T.
I’ve heard positive things about the injections, in fact a friend of mine is due to have it done soon too. I’m not sure which she’s having done but it sounds like facet joints. I hope the drugs work for you, can you also let us know how you get on too please?
Cath x
Right I’ve been on these capsules for 3 weeks now, the idea was to build up to 4 x 10mg a day ( this is the recommended safe dose by all accounts and allows for the fact it is immediate release instead of the fampyra sustained release 2 x 10 mg per day ).
So I ordered 90x 5mg and 270 x 10 mg to last for 3 months. Are there any benefits ? Yes I think so but to be completely honest its inconclusive because any improvement could be normal fluctuation anyway, given the changes in weather, a slight cold and other factors that seem to exacerbate MS.
The problem I’ve had is getting the dose right , at times the 10mg tablets make me feel dizzy with a mild headache, so Ive experimented by taking 6 or 7 x 5mg throughout the day, this has stopped the dizziness but of course Im going to run out of 5mg capsules a long time before the 10mg . So I chopped a 10mg in half and just dabbed half of it with my finger and took it like that. Surprisingly it doesnt tast that bad considering its bird poison but it makes your mouth and tounge tingle like sherbet without the sweetness. Now Im doing the same but mixing it with some water and taking 5mg every 2.5 hours. A bit of an inconvenience but Ive got all the time in the world.
So these are the positives and negatives Ive noticed.
Positives
1/ Not so constipated
2/ Maybe an increase in walking speed and length of time of being able to walk ( shuffle ) before having to stop. This fluctuates though and somedays there appears to be no improvement at all.
3 / Not so tired and getting up earlier
4/ May have helped bladder control and that urgent feeling when trying to walk.
Negatives
1/ Can cause dizziness and maybe headaches but I got those anyway.
2/ No overnight benefit as far as stiffness is concerned.
Conclusion
Promising but at this stage inconclusive as far as walking is concerned but relatively happy with the positives I’ve mentioned. If it stays like this the question is are those positives worth the cost to benefit ratio.
I’ll continue and hope theres improvement in the summer months from last year, which was pretty bad !
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Hi nw1
Did you do the 4 week trial that uses the drug provided by the drug company, to see whether it improved your walking speed, prior to buying the ampyra?
I wonder if this would have helped you establish whether it worked for you, and in what way.
Bouncy
I know this was a long time ago, but have only just got back to replies. Can I ask how you get it from bupa?
On the Biotin for ~Progressive MS facebook group - l noticed that many people take Ampyra - 4AP. And some get theirs from a pharmacy in ltaly. lf you google it - l think there are several places you can get it from. You do need a prescription - which your GP can give you - or go through E-Med and get a private prescription.
l have not tried it - as l have read-previous posts on this forum- how some people are worse off after trying it - this has put me off.