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  • On 21 October 2009, there was a suggestion on this blog that fampridine might have a negative effect due to the additional strain put on damaged nerves, which obviously put me right off.
    “There is now good evidence that increasing the energy requirements of axons may result in further axonal injury and loss” The full article can be found here: http://multiple-sclerosis-research.blogspot.com/2009/10/fda-approves-fampridine-for-increasing.html
    Should I assume that this is no longer a concern and the drug is safe to use? I have PPMS and the possibility of improving my walking ability is very appealing, but not at any cost. I am a patient at The London and wondered if the drug is available to try, or are there funding constraints?

  • Re: "Should I assume that this is no longer a concern and the drug is safe to use?"

    No not at all; this remains a concern. Unfortunately, to the best of our knowledge, there are no clinical trials or experiments that are ongoing that will answer this question in the near future. I remain concerned that a downside of Fampridine is accelerated disease progression. I will tell all MS'ers in my care about this concern before giving them a trial of therapy.

  • Is this where I post a question for Dr Baker? If not, then where?

    Just in case it is, my question is, given that Fampyra has a body-wide effect on nerves damaged by MS, why is it only seen as a drug to improve walking?

    I have been taking Fampyra for seven weeks. I have seen a 30% improvement in my walking speed. I have also experienced a big improvement in the urge incontinence I was suffering from and a great reduction in the amount I have to sleep in the day (I was about to start on Modanifil). The improvements all came in the weeks after I started on Fampyra.

    Thank you

  • Dear Denise

    Is this the place to post…well all our emails are on the blog, but clinical questions are best directed to Prof G..

    When you do a clinical trial you have to state what your drug will do. In this case it was believed that the influence of famprya would be best shown by an influence on walking and so that was a endpoint in the trial. They could have picked other endpoints and maybe they will go back and get licenses for new indications in the future

    For example Acccoda who licensed the drug to Biogen for MS, is trialling the drug in spinal cord injury to see if it effects spasticity.
    So it has potential to do more than just influence walking

    In UK sativex has a licence for spasticity but in Canada it got its licence for treating pain.

  • I have SPMS and have been taking Fampyra for about 18 months and know it works for me. It has especially helped with my hands and arms. The comments I read here are almost 4 years old and I'm wondering if there is anything more up-to-date? Are there any folk who have been taking Fampyra for several years now? What is the lastest thinking about Fampyra actually causing an increase in progression? Thank you.

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