Forum

FAMPYRA

Hiya,

Never posted to anything before so hope I get this right. I was diagnosed just over a year ago with secondary progressive (I think, consultant a bit difficult to understand). I’ve just changed consultants and have been given the chance to try Fampyra. My biggest concern has been not being able to walk any distance so this looks like a positive treatment to help with that. I took my first 10mg this morning so am just waiting for any kind of reaction but have no idea how long it should take or anything. The trial lasts for 2 weeks and I’ve been given a 4 week supply free (thankfully as it willl cost around £190 a month). Anyone else trying or tried this drug who can give advice I’d be grateful. I’ll update with my experiences and hopefully improvements.

I’m on Famyra (three months). Benefits appeared after 3 - 4 days. Less stiffness, much improved fatigue, better bladder control. Walking speed doubled! Some people take a month to notice any benefits, so a two week trial is too short. Search on ‘Every day living’. There is quite a lot of posts re Fampyra there.

Hiya,

I now seem to have two threads to this running as I thought my first post hadn’t worked and did another, very confusing! I searched in Every Day Living but nothing came up. Still my other thread has attracted loads of helpful advice so I’ll stick with that one. It’s interesting to hear you say it takes some longer, although I was given 4 weeks supply my consultant said we should know after a fortnight. I am seeing real improvements now in walking speed and distance without foot drop so fingers crossed!

Skye

That’s very promising, Skye !

I’m only on day 6 of my Fampyra trial and have already seen my walking speed improve (…keeping a record of times over a set distance) and drop-foot less severe.

I have, however, noticed that the ‘morning’ dose is much more effective than the ‘afternoon/evening’ tablet.

However, it’s very early days as yet so there may yet be a ‘cumulative’ effect too?!!

(Sadly, the NHS in this area don’t fund Fampyra, so it could only be prescribed by a Private Neuro …who seems to charge for his breathing!! This is potentially going to be rather costly as MS has caused me to give up work and now live on benefits and previous employer’s insurance!!)

Hope it continues to be of benefit to you!

Dom

I have just been given the chance to try a one month’s supply of Fampyra, but really quite nervous that it may make my walking worse. Just spent 2 weeks trying Cannabis drug Sativex, and it made my Mobility worse hence my being apprehensive about Fampyra. Now selling 2 complete Bottles of Sativex unopened for £250.00, if anybody is interested. Cost me £400.00.