Forum

Fampyra

Hi everyone, Can anyone pls tell me about this medicine ie fampyra. I read somewhere on this site that it can help some MS sufferers. I have primary progressive MS and wheelchair bound. Will this help me? I have managed to get an appointment to be assessed for part funding but my MS nurse warned me that many fail the assessment. What does the assessment involve? please help.

Hi

Fampyra/Ampyra/Fampridine is a fairly new drug, used primarily to treat walking problems. It’s use is recommended for patients with an EDSS score of 4 to 7. Only about 30% of patients respond to it, in my local area I believe for about 8 people who tried it only1 reported any significant benefit. Typically an improvement in walking speed of about 25% is reported.

You may find these links helpful:

http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/balance-and-dizziness/coping-with-balance-problems#Fampyra

http://www.mssociety.org.uk/forum/everyday-living/ampyra-0

If you would like to know more, PM me with an email adress and I will send you some more doucments.

Anne

There have been lots of threads on Fampyra. This is a drug that has been tested, licensed and marketed as a walking drug but is actually a drug that improves the transmission of messages in nerves with lining damaged by MS. If you are in Dudley Health Authority you may be able to get it on the NHS, otherwise you have to pay around £180 a month. I’m not sure whether the doctors will prescribe it to a wheelchair user - you may have to be able to walk for it to give benefit - I think the assessment is a walking test. Here are the other threads on Fampyra, if you want to find out more

http://www.mssociety.org.uk/forum/everyday-living/fampyra-£190-month

http://www.mssociety.org.uk/forum/everyday-living/fampyra-and-postcode-lottery

http://www.mssociety.org.uk/forum/primary-progressive-ms/fampyra-0

http://www.mssociety.org.uk/forum/everyday-living/4-ap-uk

http://www.mssociety.org.uk/forum/primary-progressive-ms/fampyra

http://www.mssociety.org.uk/forum/everyday-living/fampridine-fampyra-launched