Fampridine (Fampyra) launched

03 October 2011 Author: MS Trust Fampridine, a drug that can improve walking in MS, has been launched in the UK. Fampridine, taken as one 10mg tablet twice daily, was granted a conditional marketing authorisation by the European Commission in July 2011 to improve walking in adult patients with MS who have walking disability (defined as scoring 4-7 on the Expanded Disability Status Scale). The marketing authorisation is conditional on Biogen Idec (the pharmaceutical company marketing fampridine in the UK) conducting further research about the benefits and long-term safety of fampridine. NICE (National Institute for Health and Clinical Excellence), which issues guidance on whether treatments should be funded by the NHS, has not appraised fampridine. Decisions on whether or not to fund treatment will be made by local primary care trusts and funding boards. Walking problems affect a large proportion of people with MS and may be caused by a wide variety of factors. Not everyone taking fampridine will see improvements in walking. In clinical trials, approximately one third to one half of people taking fampridine found walking speed improved, with an average improvement of about 25%. Fampridine may be effective for those whose walking impairment has been caused by reduced nerve transmission. Fampridine works by blocking some of the chemical processes in nerves to allow electrical signals to continue travelling along damaged nerves to stimulate muscles. Speak to your MS nurse or neurologist if you would like to find out more about fampridine and whether it may be right for you. http://tinyurl.com/69x96pg

Hi, If I pass the assessment I will be getting Fampridine. I would like to hear from people who were on this drug for 2 years. Then had their prescription stopped after 2 years. as I have been told will happen to me. I am worried that after the 2 years my MS will deteriorate to the point it would have reached if I hadn’t taken the drug. I am worried that this might be a quick deteriorating in my SPMS.

Where do you live? I thought it was not available in England in the NHS.

This drug is under trial in Wales, I would like feedback from people who have been on this drug. If they stopped getting the prescription after two years what was the effect on their mobility?

I’m as you might guess in England! I have slowed down a lot in the last year and besides my balance having worsened after a relapse before Christmas not worked out why. A couple of pseudo relapses (including a bad one with COVID) and the heat are my excuse. Persevering with exercise but interested if Fampridine did work. Not drug phobic, but they usually impact other muscles/nerves etc as well as the ones they are targeted at.
Perhaps if it works in Wales, England will change their mind!

Here is Professor G’s take on it.

ClinicSpeak: fampridine trial results – Prof G’s MS Blog Archive (ms-selfie.blog)

#ClinicSpeak & #ResearchSpeak: is long-term fampridine good or bad? – Prof G’s MS Blog Archive (ms-selfie.blog)

Thanks. I will persevere with the exercise rather than waiting for the magic pill! Working on the hamstrings. Need to get out and about more. My wife notices my mobility improves markedly if there is a preserved railway involved and dips if there is shopping.