Forum

fampyra

has anyone taken this to help with walking?

carole x

Yes! Just today, finished first four weeks. It really helps me to walk, with a rollator, twice as quickly. Bladder urgency almost gone, as has foot drop. Fatigue massively improved. Try it, if you can.

Hi John I took part in the trials last year here for 3 months. Initiallt hobbling with 2 stick and rollator. After 3 months was able to walk…albeit like Bambi without sticks. Going back to Neuro this pm as she sent me an email telling me it is now licensed here so will pick up a prescription this afternoon. Go for it lad it may take a couple of months to kick in fully,

Rick

Rick Did you find other benefits e g fatigue, bladder etc? Also, I am taking the tablets at 6 am and 6 pm. The benefits seem to tail off at about 5 pm and come back about 6.30 pm. Did this ‘weak time’ happen to you? John

thanks for replying

i’d love to try it especially as it helps with fatigue

however i asked my ms nurse today and she told me that the PCT has put a block on it.

f$5&($ b**&^%$

(excuse my french)

carole x

Was told yesterday that our PCT (Mid-Sussex) weren’t funding this.

However, my neuro is referring me on to a colleague in the private sector so I can at least try out Fampyra for one month before committing to buying it privately thereafter.

I understand there’s roughly a 40% rate of people that don’t get any benefit from this drug - so even though I’m looking forward to trying it but my expectations are suitably tempered!!

Dom

(PS: I also gather that it can help with much more than just walking - so there are a few additional areas that I,d be interested in improving!!)

…sorry all …shoul’ve said “…our PCT (Mid-Sussex) wasn’t funding this.”

Dom

I do not know of any PCT/ Care Commissioning body in the southern half of the UK that will find it.

The success rate is not good (hence the free trial) but from what I hear, if it works well it is marvellous.
I see my neuro in 3 weeks so I might have a go at him about this.

Geoff

Bump

I took part in a study last year before it was licenced here after 3 months was able to walk without sticks. It has now been licenced and I pick up my prescription tomorrow. So if you have the chance go for it.

Rick