Hi folks. I’m new to the forum, I hope I’m doing this right! I’ve been taking fampyra for about 5 years. My M.S nurse thinks it’s doing very little for me now, if anything. I think she’s probably right. Things have changed for me in the last year. I wonder if anyone out there has experience of stopping fampyra. If so, did you notice any great changes? The thought of saving the money is good but I don’t want to find I regret stopping it if my abilities change for the worse. I know we react in different ways. I’m curious to know what other people’s experiences were like.
HI Tilly,
Sorry about having MS but glad you’ve found this site.
Yes, you’re doing fine - Good snappy topic.
I’m on fampyra and have been for 4 years. Noticed my walking was slightly better but main thing was not falling.
Neuro suggested taking only 1 per day ( usually 2 tablets a day, 12 hours apart) Found I could hardly move my legs so went back to two per day. Walking still getting gradually worse.
Yes, they cost about £200 per month. Free in Wales and Scotland but not approved by NICE in England.
If they were free on NHS I would take so just have to pay.
Not sure about any withdrawal symptoms, maybe ask your neuro.
With your MS / neuros advice you could try going down to one per day see if there’s any difference.
Let us know what you decide.
Jen
Hi
I used to take it. I stopped about a year ago after I’d fallen and broken my hip …so any attempt for speedy walking was a thing of the past. No side effects from stopping, apart from a healthier bank balance!