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.