my gp has sent a letter to neuro for a private prescription for fampyra, looks like hes said no, can he refuse when im going private
Yes, of course he can refuse. Going private doesn’t mean your consultant is obliged to prescribe whatever you ask for - he still has to exercise clinical judgement. Not all decisions are based on money. Maybe he’s not persuaded of the effectiveness of Fampyra, or its suitability for your particular case, or he has safety concerns?
no hes an idiot, hes never given me anything tells me diet and supplements are a waste of time, never interested in anything just says no trials or drugs for ppms see you next year.
I haven’t seen a neurologist for eight years, or so. Told me I am primary progressive and there was no treatment, so there was no point in seeing him again! Anyway, my GP gave me a private prescription for Fampyra five weeks ago. Costs £240 for four weeks supply, although I’ve just discovered that BUPA pharmacy can supply for £191. So far, I’ve seen my walking speed double (at least) and fatigue very much improved. If my balance gets better I could dump my rollator ! Others have told me that benefits still appear over a few months. Not everyone is responder, I’m lucky, but try it for a month. Johnh
Ah, I was told I’m highly likely PPMS and Neuro looked it up for me when I asked, then said no… bit blury on it now (I was pretty upset that day) but I think it’s a supplemental to DMD’s so they can’t give it for PPMS.
I’m going to ask my GP about LDN though, seems worth a try - I don’t see my neuro for another year either.
Sounds like a good reason to ask GP to refer you to another Neurologist.
The one that I trusted moved on last year. The one I saw in January is in the “I’m not quite sure of, yet” category, and I have another appt. next week. I don’t want to change (driving licence renewal coming up later this year), but I know that there is a good one in a hospital much nearer home. If my licence is not renewed, I will have to change anyway Decisions, decisions …
FWIW, I believe that Healthcare at Home can supply Fampyra even cheaper than BUPA takee a look at:
They deliver my Copaxone, BTW
i have just phoned my gp and asked to change consultant
Well done Joyj - its been my experience with ms [31yrs and l am not bragging] that you have to be pro-active - try to make things happen. What have we got to lose.
No doubt you have looked into Fampyra, and like many of us who are ppms or spms are not offered any treatment. So when something like this comes along - and we have heard that for many it has good results - why not give it a try. GP/Neuro’s think nothing of offering meds designed for people with epilepsy/HIV/Bi-Polar - even chemotherapy drugs - all with questionable side-effects.
Fampyra - is certainly going to be my next question to my GP when l next see her.
I did…and it was the best thing I did. No regrets.
Just done a bit of ‘googling’ - and l found this important bit of news which may help - Barts and The London MS Research- Access to Fampridine. Seems the drug manufacturers will let you have a months free trial - and after that - if the drug has helped you can get it on private prescription. There are several youtube videos of the effect some folk have had with this drug.
One way of looking at it is - if it did work well for you perhaps you would have a stronger case to get it funded - but another more cynical one is - they are acting like drug dealers - get you hooked for free then make you pay. But then what price would you put on being able to be - well more able.
Biogen ldec Ltd is the company licensed to produce and market Fampyra - outside of the US.
MS-UK is another site with info.