Tell us your experience of using Fampyra

Everyday living
1

The MS Society is submitting evidence to a commissioning group on the value of Fampyra (also known as Fampridine). If you have tried Fampyra the Campaigns team would like to hear your experiences of taking the medicine and how it has improved your quality of life.

If you have you been able to access Fampyra:

· What do you feel are the advantages and disadvantages?

· What benefits do you feel Fampyra brings you over other treatments you have used i.e. physiotherapy, orthotics like splints or braces

· What treatments and/or therapies were you using to manage your walking ability before being prescribed Fampyra

If you haven’t managed to access Fampyra:

· What treatment are you currently using to manage symptoms relating to your walking ability?

· What are the advantages and disadvantages of the treatment you are currently using?

· Have these treatments met your needs and how do you think Fampyra will meet your needs?

· What is your preferred choice of treatment for symptoms relating to walking ability?

You can contact the Campaigns team with your responses at campaigns@mssociety.org.uk

2

I have been on Fampyra for 2 and a half weeks and the resuts are for me are incredable. I am able to walk anout the house without using sticks, I can walk in outdoor eares on the flat. My Neuros are both impressed and have videoed both pre and post phases of Fampyra. Major disadvantage is it is not licenced here so unsure if I will get a further suppy in 5 weeks time when I return to hospital.

3

Just bumping this post - to go with another one similar post.

4

Graf1, thanks for the PM.

Frances, thanks for the bump.

I have commented at more length on the other thread.

Geoff

5

I have just added a comment on the other thread

Geoff

6

Hi Geoff,

I work for the Policy and Campaigns team here at the MS Society. Coulf you let me know which other thread you have commented on please? We’re very interested to find out what people’s experience of Fampyra has been in order to respond to a local commissioning group’s consultation.

Thank you

7

I believe it was this one.

http://www.mssociety.org.uk/node/641793

8

And, as so often happens, whammel is dead right.

Geoff