I’m just about to start Fampyra. How long will It be till it starts working, if it’s going to, and am I likely to gain further improvements over time?
My experience was that I started to see improvements (to bladder control, excessive sleepiness and muscle control) in the first few days. My walking was faster when I did the timed 25 metre walk after I had been on the drug for two weeks. My walking carried on getting faster for the next five months or so but I have not seen any improvements for the last three months. The other improvements that I saw have faded a bit but not completely. I’m still walking with one stick and I needed two before I started on the Fampyra.
Thanks, Sewingchick. I actually started ten days ago and I, too, am walking quicker and fatigue is less. I’m hoping for more improvements over time, like you. I take the tablets at 6 am and 6 pm. I find that the benefits diminish about two hours before the next tablet. Is this normal?
I don’t think I’ve ever really thought about it - I shall see if I can observe that in myself. I take them at 10am and 10pm - 6pm is dinner time for me and I would be too near breakfast if was having them much earlier than 10.
Sorry for butting in, but does neuro or GP prescribe, I’m very interested in this.
Neuro for me - but unless you’re very lucky as to which health authority you’re in, you have to pay for it yourself. It’s £185 a month. Doesn’t make any sense to me and I think we should all be contacting the MS Society to get them to hassle NICE to look at it. I’ve done this - ring the campaigns team.
My GP gave me a private prescription. He also prescribes LDN on the NHS. I’m lucky!
It has just came on the market here, last year I agreed to take part in a 3 month trial of Fampyra after about 4 weeks I was walking easily with 2 sticks and after 3 months I was able to wlk independently…albeit slowly. But then the trial stopped and after a few days needed to go back to the sticks. Thankfully it has been approved here now and I start back next week once I pick up my prescription. God luck with yours.
I asked my my GP about this and he told me that i had to see my neuro and he told me that its not available through any health authority. he said that if i wanted it i was going to have to pay. i cant really afford that on benefits so I’ll carry on as usual.
Thanks, I won’t have any joy with my GP as she is reluctant to prescribe anything if neuro hasn’t writen to her about, (whatever it’s for)it’s like I caouldn’t possibly have anything else wrong, she puts everything down to MS, so I will speak to the MS nurse first and get a referral…who knows maybe this time next year
my ms nurse said ask consultants secretary who said get gp to write to consultant. phoned my gp hes sending letter
and will say he has no objections. i did say i would pay though