Hi, I’ve had RRMS since 1992, quite mildly. But like a fine wine it has matured with age, leaving me in a state where I’m grasping at anything I can to make things better. A few months ago I heard of Fampyra, read some positive reports of it and wanted to try. But I live in England, so I’ll have to pay.
I found myself a private prescription on Tuesday, great - but now I don’t know where I can buy the drug! Do I have to nip over the border to Scotland and find a chemist there?
At my wits end, please advise if you know anything about this …
Not sure if this helps, but UCH in Queens Square, London used to offer Fampridine on the NHS and this was the supplier. enquiries@healthnethomecare.co.uk
You should be able to tell if you are a responder in couple of weeks, so not too expensive.
Probably best to let your nurse know, because there can be some unpleasant side effects. Fampridine (Fampyra) | MS Trust
I heard that Queen Sq are no longer offering Fampridine to patients who joined the clinic after 01/01/26. Coincidence maybe but this followed another attempt to make NICE agree to make the drug prescribable in England.
Fampridine is only effective in about 1/3 of people with mobility problems using the 25 foot timed walk as a measure of efficacy
Thanks for this, I’m on the trail still but I have found a supplier! For £190 pcm I can get it from Lloyds Pharmacy - and if it does work I’m off to India to get a cheaper supply. But my private neuro has buggered off on holiday, so I’m still in limbo!
Comes out of licence in July, so it might get cheap enough for NICE. Honestly, I would beg borrow or steal to get my mobility back.
Wow! Thanks for telling me! I’ve got my free trial coming tomorrow, and maybe my next dose (if it works) on the NHS. No more money to the consultant who’s trying to supplement his retirement funds, but doesn’t know how to send a prescription to the correct pharmacy …
It’s out of license now, which means the NHS are paying a lot less for it.
Fun fact: Did you know it started life as a pigeon poison?
Yes I did and probably explains why seizures are a possible side effect.
" 4-Aminopyridine is also used under the trade name Avitrol as 0.5% or 1% in bird control bait. It causes convulsions and, infrequently, death, depending on dosage.[20] The manufacturer says the proper dose should cause epileptic-like convulsions which cause the poisoned birds to emit distress calls resulting in the flock leaving the site; if the dose was sub-lethal, the birds will recover after 4 or more hours without long-term ill effect.[21] The amount of bait should be limited so that relatively few birds are poisoned, causing the remainder of the flock to be frightened away with a minimum of mortality. A lethal dose will usually cause death within an hour.[[21]]