@Henrietta 

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Henrietta

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 🥵
@RC83

@Henrietta Many thanks for taking the time to write this up - it's really useful.