Does anyone know where I can get 4-AP(4-Aminopyridine) compounded in the UK? I’ve tried Fampyra for 3 months but I can’t afford the £400 per month. I’ve read it’s much cheaper than Fampyra but don’t know where to get it or if it’s available on NHS prescription. All help is much appreciated Andy
Hi Andy, I hadn`t heard of this drug, so I googled it.
Info says it is a trial drug in MS and can let messages travel down nerve pathways without being lost due to damaged myelin.
Have I read it right?
It also says it is used to poison birds. It says it is poisonous to all mammals, including humans, if taken in high doses.
Now I am curious, Andy. Why/who/how are you taking it and is anyone supervising you taking it?
Hi Andy, I’m really interested in your post but can’t help you,sorry, but maybe you can help me? I have followed 4 AP for many years, at least 14 - 15. As far as I understand (this is from my head, not google) it was developed into fampyra and eventually licensed. 4 AP seems to increase the transmission of damaged nerves. I think 4 AP is cheap but made into fampyra it is sold at a much marked up price. I also think 4AP is used in other drugs for other conditions. I do not now where or how you can obtain 4 AP in qBritain, I have never tried. Can I please ask where you got fampyra prescribed, I would love to try it but can’t be bothered getting into another battle with the NHS over a drug they won’t prescribe, so have never bothered even trying. Can I also ask, please, what sort of quantity you got for £400 a month? Cheryl:-)
I was on 4-ap two years ago. At that time, I did find a compounding pharmacy in the UK that would supply the drug but wanted £250 for 28 capsules.
I eventually got it from Skips Pharmacy in the USA, California, I seem to remember it cost about £70 including delivery by UPS.
My doctor emailed a private prescription. I think the dose was 20mg per day.
It didn’t seem to do anything for me except cure mmy constipation - and how!
Hi guys, I’ll try and answer all you comments/questions in a single post. Here goes - 4-ap is the main ingredient in Fampyra(the slow release formulation of 4-ap/Fampridine). Yes, it was originally developed as a bird poison but don’t forget that chocolate is poisonous for dogs and paracetamol is poisonous for cats, it all comes down to physiology. Bupa are the main distributor for Fampyra in the uk. They charge £400 for 56 tablets(28 days supply - 1 tablet every 12 hours) My neuro prescribed me Fampyra after he got the forms from Bupa@home. I thought they would cover the cost since I’m a Bupa member but I was told they don’t cover chronic conditions - typical(but they’re happy to make money out of us MSers Here is the link to the NHS medicines info page about Fampyra - http://www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugID=2895 And here is an interesting post from Australia about 4-AP http://www.ozms.org/modules/newbb/viewtopic.php?topic_id=3253 I hope I haven’t opened a can of worms Andy
Intersting. Thanks for the info Andy. Do you think you will buy it from California then?
Hi Poll, I’m gonna phone Dicksons in Glasgow first(where I get my LDN, and see if they can help) otherwise I’m happy to get it from the USA if I can’t get it in the UK. I do need to make sure it’s covered by the NHS though. Andy
Hi all, Just wanted to follow up on my previous post - after much debate with my neuro, I finally convinced him to prescribe 4-AP for me. I’m getting it delivered from Skips pharmacy in Florida at a cost of $70+$60(bit cheaper than the £400/mth charged by Bupa) for shipping via FedEx to the UK for a months supply. It’s the immediate release capsules, not the slow release tablets made by Biogen so no problem with patent infringement(as my neuro was worried about). I should be getting it in about a week so I’ll keep you all posted on any progress Fingers crossed for a good result Andy
What happened about this? I have posted (a very long post) about Famprya, which I have had a very good, albeit very expensive, experience with. It’s on the famprya and the postcode lottery thread. I have the idea that the slow release mechanism, that makes Famprya so much more expensive than 4-AP, might also be the thing that makes it work. But I would love to hear I was wrong about that.
It appears that there is a greater risk of seizures with the immediate release version, although this side effect is still possible with the slow release type.
This video explains how fampyra works and covers the slow release action.
Thank you so much for posting this, it’s really interesting. I still wonder why a drug that helps all nerves transmit messages is labelled as a walking drug rather than a drug to reduce all symptoms in MS. The doctor who is giving the lecture about how Fampyra works talks about muscle strength and muscle fatigue in general but never says why this would apply to walking but not to other functions. Thanks again, s.
I emailed Dr Mark Baker about why he only talked about walking speed. The answer was that the drug co. only tested walking speed and maybe other things will be tested if they get good reports back from people on it. He also said that walking speed is very easy and clear to measure unlike some other things so I suppose that’s why they only measured that. Still seems a weird world to me where this drug could provide symptomatic relief for lots of people struggling with MS but probably won’t ever be looked at by NICE and therefore never funded.
Yes, yes, I know I am 3 years too late on this thread.
I’m in the UK and I get my 4-ap from mod4all (just google mod4all 4-ap), they are in the UK.
They are in the UK. They also compound 4-AP-3-MeOH.
I am literally waiting on the postman.
Very few people I know take 4-ap, I love it. It’s made my life liveable again.
I’ll post more later, but that’s me registered on yet another MS website.
Take care, folks. I’ll write more in the morning.
I use Fampyra , supplied by BUPA (£191 for 28 days supply). I used to get 4ap from the USA. (On prescription from my GP).
i’ve just ordered 4ap from mod4all today. So much cheaper! Surprised no prescription required.
Do you think the drugs are genuine? Worrying. I won’t use the drug till I find out more about this company!
I suppose the only way you could get the drug analysed is by coughing up some extortionate amount to a lab, isn’t it : /
Just googled mod4all - and they post from Europe. l think the reason it is much cheaper is that the tablets are not timed-release - which Fampyra is. And you need to take every 2-4 hrs.
How interesting - and l wonder how much you would need. 40mg is the most you can take in 24hrs.
I have no idea why my last comment posted anonymously . I was logged in.
I take 5mg, every 3 hours or so. No seizures yet. Don’t really go near 40mg though.
I’ve been trying to start a 4-ap discussion on numerous message boards for a while now.
For me, I cannot walk, well I can as long as I can hang onto the walls.
But with 4-ap, I can bounce along nicely. Still walk all lumpen but I can walk independently of walls and I never fall over. If I stumble (and I do), I can recover and not his the floor. Fast walking as well (for a short time).
I like the instant release 4-ap, I can feel it come on, I’ve gotten over any side effects a long time ago.
No sponginess in my feet any more either, I can really feel all of my extremities . I do like 4-ap.
I’ve no issues with mod4all. I’m trying their 4-aminopyridine-3-methanol next, anything to help me walk. I can’t stop working, I’ll never pass an ATOS disability test. Not in today’s Britain.
I’d welcome any other comments on 4-ap, suppliers, effects, and that.
Talk to you all later.
This is an interesting post - especially as so many have to pay a higher price for their Fampyra. And this is the same med.