It all seems to have gone very quiet on the Fampyra front !! Anyone still using it ? Any lasting benefits or otherwise to report ?
Same question for 4-AP that you can get from the states, which is the immediate realease and cheaper version of Fampyra! Anyone using this ??
I’ve been on Fampyra for two years. My mobility is still getting worse, but I can hardly walk without Fampyra . It also helps bladder, pain and reduces spasms. I’m soon reminded if I miss a dose !
I tried 4-AP for three months before Fampyra, but didn’t seem to help, although my mobility was much better then.
The cost of Fampyra always seems to be exaggerated when articles are written. NICE determined that it wasn’t cost effective for the NHS at £4000 per annum . My GP gives me a private prescription and I buy it from BUPA Healthcare for £191 for 28 days’ supply.
Hmm hardly 4000 per annum is it, but the decision remains without any indication of what cost they would be prepared to meet , if any. What is the Ms society doing about this ? Has the question even been asked re what they would find cost effective.
Meanwhile Im looking at 4-AP and it would seem through anecdotal evidence that the optimum to take would be between 30-40 mg per day in 10mg doses, however because its not slow release it would mean ramping the dosage up slowly .I.E 5 then 5+5 then 5+5+5 then eventually 10+10+10 or greater depending on tolerance. Now heres the rub and of course its the cost. Best I can get it is 3 months supply for about £155 delivered from the states, which of course is cheaper than £190 per month for the fampyra here.
Next problem is convincing the doctor, who although is happy to prescribe me the fampyra, will take some convincing about the 4-AP. Truth is I am taking some convincing as researching it with all its different names ect is time consuming to say the least, so to present the case to a doctor who barely speaks english and has about 5 minutes time ig going to be difficult in the extreme !
Where does NICE get the £160k from ?
The annual cost is just under £2500.
i seem to remember that 4-AP cost about £80 for three months’ supply including delivery by UPS.
I got it from Skips Pharmacy in Florida .
Forgot to mention that I saw neuro recently who suggested Fampyra , although I was already on it.
I think they tried to blind me with science but in short they said that “Although there were benefits for Fampridine in terms of walking speed these were too small to be considered sufficiently clinically important by the committee. In an analysis of responders in Fampridine, the drug had an incremental cost effectiveness ratio (ICER) of around £160,000 per QALY (quality adjusted life year) gained. Generally, interventions with an ICER of less than £20,000 are considered to be cost effective. On this basis the GDG (committee) did not feel it was appropriate to recommend the use of Fampridine for ms.”
Say no more!