Fampridine has long and short term benefits

Ruck T, Bittner S, Simon OJ, Göbel K, Wiendl H, Schilling M, Meuth SG. Long-term effects of dalfampridine in patients with multiple sclerosis. J Neurol Sci. 2013 Nov 16. doi:pii: S0022-510X(13)03040-2. 10.1016/j.jns.2013.11.011. [Epub ahead of print]

BACKGROUND/OBJECTIVE:Dalfampridine is the extended-release formulation of 4-aminopyridine and is approved for the symptomatic treatment of impaired mobility in patients with multiple sclerosis. Our aim was to examine the short- and long-term effects of treatment with dalfampridine on motoric and cognitive assessment parameters of multiple sclerosis (MS) patients over 9-12months.
METHODS:Fifty-two patients with MS with an EDSS between 4.0 and 7.0 and impaired mobility were evaluated for parameters of walking ability, MSFC, cognitive and motor fatigue and evoked potentials at treatment initiation with dalfampridine as well as 2weeks and after 9-12months later.
RESULTS:Thirty out of fifty-two patients (~60%) were still on treatment after 9-12months. Two weeks after treatment initiation, significant ameliorations could be found for T25FW, maximum walking distance as well as motoric and cognitive fatigue which still persisted after 9-12months. In contrast significant effects for velocity were observed only after 2 weeks, for improvement in PASAT only after 9-12months. A tendency for improvement of somatosensory evoked potentials was found in a subset of patients.
CONCLUSION: Dalfampridine shows positive short- and long-term effects on motoric and cognitive assessment parameters in an open-label observational study in a cohort of patients with MS.
Fampridine can have long term benefits on walking outcomes. What’s your experience. 

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  • MSers with walking difficulties should try 4-AP…….and no I'm not an employee of Acorda Therapeutics:-). Why should it only aid in mobility impairment? Are demyelinated axons restricted to the spinal cord?

  • All Msers with mobility issues should give 4-AP a try…….no I'm not an employee of Acorda Therapeutics or a stockholder:-). What have we got to lose?

  • In Australia, it has been possible to trial Ampyra, known as Fampyra here for four weeks free. This is effectively sufficent time to ascertain whether this drug will work for the individual – as the reported data suggests around 35% of MSers will benefit. I took the drug for the four week trial, and yes, I am one of the fortunate persons for whom this drug was very successful, it did increase my walking speed by a measurable 25%. I could not attest to any benefit for fatigue. What I did observe, curiously, was a return to sharper vision in one eye that was a little blurry. Biogen makes this drug cost prohibitive for most MSers in Australia, around $600 per month. There is a current application before our Pharmaceutical Benefit Scheme to have Fampyra this listed on this scheme, which will reduce the price to around $5.90 for concession card holders and $33.00 for non concession.

    So, you may ask – what has happened to those of us who have successfully completed the trial and cannot afford the $600.00 per month? Solution – a number of our neurologists are prescribing scripts for the active ingredient 4-aminopyridine in slow release which we source from compounding pharmacies who make up the scripts. There are slightly more risks with the variability in compounding, but for me, I sourced an excellent pharmacy that made me a dedicated batch for six months supply for $96.00 whilst awaiting PBS listing. I trialled the Fampyra in November -December and commenced the compounded version immediately after the Fampyra limit was exceeded. I am happy to report that I have not found any difference in function between the Fampyra and the compounded 4-aminopyridine.

    • In the UK you can also get a free month trial but then you will have to pay. This is information is very interesting.

      This is the problem of repurposing drug target by pharma eg. laquinimod, tecfidera, movectro that there are generics. However, they don't have licencesor theapplication and this can cause issues for your prescribing physician

    • Do any of TeamG know how it would be possible to do what Helen has done, here in the UK? Or at least how to begin to go about it? Thanks

    • Re: "Do any of TeamG know how it would be possible to do what Helen has done…"

      Yes, you need to get your consultant to write a private prescription for you. This is why the private prescribing issue is such a big issue on this blog.

  • I am currently on a free trial of Fampyra. This blog has mentioned a concern about a possible negative long term effect from Fampyra. Is this concern still an issue, or has there been any research into this?

    • There is no data it is a hypothetical..surprise surprise a certain company does not want to investigate. The idea is it that Fampyra lets your nerves work harder and this could be damaging. A more knowledgable person in the group is not convinced by this logic.

    • Have anybody on fampyra had any worsening of their spasticity? This relates to a question posed by someone in the group, the neuros have not got back to me

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