Has anybody been on Ampriya ? helps with walking
I was on a trial for Fampyra/Ampyra/fampridine, but it was bad for my migraine so I had to come off it after only my third dose. Apparently it’s working well for the others on the trial though.
Karen x
I was glad to find this post about Fampyra (known as Ampyra on the other side of the Atlantic) but sadly there hasn’t been much feedback from other MSers.
MS society website says:
‘As of today (Oct 2011), neurologists and GPs are able to prescribe it to people with MS who meet the criteria. However, it’s unknown at this stage whether PCTs and local healthcare authorities will be willing to pay for the treatment’.
Few weeks ago I asked my neurologist about this drug. In fact I saw his registrar who said she hadn’t heard about it but went to speak to the neurologist. He said that the drug hasn’t been prescribed to anyone seen at the hospital. The registrar said she was going to do more research on fampyra including speaking to the hospital pharmacist. Still haven’t heard from her yet and I’m not holding my breath! I also said that I woudn’t mind trying the older version of Fampyra, a drug called 4-AP which has been in use for some 10 years if this was easier to obtain.
Ampyra gets a lot of positive feedback on American/Canadian MS fora but it’s hardly known in this country. Given that potentially it is the only medication that can help people with progressive MS it is annoying that it’s not been prescribed in the UK which to be honest sounds like a 3rd world country.
It would be good to hear from anyone who may have been taking it, how they got it and what/if it made any difference to their walking. Best wishes.
Maryla
I think it is still early days in terms of availability with Ampyra/Fampyra/Fampridine over here. Some NHS trusts are struggling to get funding and some patients have been asked to consider funding their own medication. I believe the manufacturer has offered to fund the first 4 weeks with the NHS picking up the bill after that. The four weeks is key as it will be known in that time span whether the patient has benefitted from taking the drug.
Fampridine is no miracle cure for MS, have a look at: http://www.mssociety.org.uk/ms-news/key-recommendation-brings-new-ms-drug-one-step-closer-licensing
A key phrase is ‘Fampyra is a symptom management drug that has been shown in late stage clinical trials to improve walking speed by 25 per cent in some people with MS’
However hopefully it will be of some benefit to some people with MS.
I tried 4-AP two years ago. Fampyra is a slow release version of 4-AP.I got the drug on private prescription from my Doctor. Cost about £80 per month, although I understand Fampyra costs about £1k monthly!
Anyway, it did nothing for me, although I’d like to try the slow release version.
John
Hi,
can somebody tell me how much is FAMPYRA /AMPYRA 10 mg 4 weeks therapy for privat patient in UK?
And where I can buy it? I tried to order through the online pharmacy (UK) with my privat prescription but not one online pharmacy has this product to offer.
Can somebody help me?
thanks
You can get ilt from Boots - that’s where I get mine. It costs (me) £430 for four weeks supply. When I’ve got time, I’m going to post about why it’s worth that to me
This information was part of an article on page 13 of the ldn research trust newsletter.
How much does it cost?
Here is the problem, it is expensive. Cost/Benefit ratio is not good. Including a Private GP consultation it is likely to cost around £250 for 56 Tablets, if you use your current LDN prescriber and if we were to dispense it. The standard dose is one 10mg tablet, twice a day. 56 is therefore a month’s supply.
http://www.ldnresearchtrustfiles.co.uk/docs/February%202013%20Newsletter.pdf
Sorry, got my 4 and 3 the wrong way round (posting in a hurry) £340 for 28 days supply. Whammel is right, it costs the NHS £230 ish. But that’s not what it will cost you if you have a private prescription, which some neuros will give and some won’t
hi since my last post i have been on FAMPYRA since xmas it has helped a little with walking and other things. For those asking about cost it was going to cost me £500 a month but it went down to £180 so got 3month suppluy for £540. Hope that helps…
I walked 300 yards today and yesterday, using a stick and holding my husband’s arm for some of it. I’ve been on Fampridine for 10 weeks. Before I started it, I could only walk 100 yards and had to use 2 sticks all the time. Still seeing improvements in my walking speed. It took me 12.6 seconds to do 25 metres before I started the drug and now it takes 7.4
Yes the price has dropped. My neuro told me it have dropped from £5000 to £2500 per year. I want to try it after I have given botox a shot first.
Moyna x