Fampridine
Had a physio appointment today at my hospital in central London so obviously I asked about Fampridine. Here are a few things which may be relevant for other people in England:
- Yes everyone is asking for it!
- As it’s just gone off patent it will be the generic version and will take a while for production to catch up with demand.
- My hospital will need to find the funds for new members of the MS team, including a pharmacist, to deal with prescriptions and follow up. Probably similar across England.
- It is (still) possible to go private for the prescription but as it is now generic it will cost £22 per month rather than the current £100s. I think if you get it through the NHS it will be free but not sure.
- In their clinical experience 43% of those taking it see improvement in walking / energy
- One of the drawbacks is the way you take it twice a day but can’t eat before it (I think for 2 hours) so timing can be tricky.
That’s it I think. I’m on the waiting list but she reckoned that given the above, I wouldn’t be getting it until the new year assuming I am eligible (I’m kind of EDSS 3 but recently have felt more like 4/5).
Hope that’s helpful and good luck for round 98,000 of 35°c on Weds if you’re in the Southeast 🥵

@Henrietta Many thanks for taking the time to write this up - it's really useful.
Yes, thanks for sharing. I read about it earlier. Some false statements about having it for fatigue and other things. It stresses its about walking. And the info you put so direct and to the point. 😊 Also, 💯 the NHS is under stress and pressure. I left in 2023 and its getting worse. I'm grateful for my MS team also in central.