I haven’t been on this site for ages I decided I really need to share some good news for those who can get it. I’ve been on Famprya for two weeks. After a week, I went for a walking speed test. Using my rollator before I did 25 feet in 12 secs, reduced to 8 secs. I can now walk around the house unaided for a while. I do 25ft in 9secs.
i had to go privately, fortunate enough to have my mum pay for it. However, compared to the cost of me losing my independence, it’s got to be cost effective. Pity NICE don’t see it that way.
i understand it loses its efficacy after 2-4 years. Buying time until HSCT is available for PPMS in the UK.
I tried Framprya it was amazing my walking was much better but I couldn’t afford the monthly price. I now take biotin which has done even more than framprya for my walking and it is much much cheaper.
Thanks Nina. I’m hoping positive feedback will help NICE change their stance. I find it appalling it’s not available on the NHS when it is a small fraction of the cost of some DMDs. Plus saving social care costs…
i also take biotin. Been on it for a long time, but only helps my bladder.
I feel exactly the same as you Claire and when I first started using it and paying for it I wrote to all who might have an interest. Nice came back with a huge calculation which suggested the drug was way too expensive to be considered. (Part of the calculation did not consider PPMSers who have no alternative in comparison to MSers who have DMDs )
A letter to a Health Minister at the time - explaining the savings in care costs compared to a little amount for the drug (which doesn’t work for all PPMSers anyway - their cost benefit analysis should consider this too) - was met with a standard response by the Office System so doubt it ever reached the intended target (Lamb)
And probably most disheartening of all was that the only one that did not even respond was the MS Society (too busy organising a 10k walk for us all no doubt…oh hang on)!
I think for some people it’s a wonder drug. But for others, it’s been a nightmare, with massive improvements initially, which then tailed off. And after stopping the drug some serious retrograde effects on walking ability and speed.
I really hope you are in the wonder drug group. I wanted to try it, but my neurologist just straight out said it wouldn’t help me. In some ways I’m glad I didn’t. Just in case it affected me adversely, I can’t afford any more walking problems, I’m already a 7 on the EDSS.
My neurologist declined too and had the cheek to cut and paste NICE guidelines in a letter to my GP. His attitude stinks, I’m wondering how to change him.
re Famprya, nothing ventured etc. I’m quite sensitive to drugs and even allergic to Baclofen.
Sonia, maybe you should try biotin…it’s improved my walking as much as framprya did and six months supply is the equivalent to one months supply of Framprya and if it works for you it improves no end of symptoms and according to my GP has no nasty side effects, although I’m unsure if others would agree with that, however I personally have had no side effects at all
I have just returned from my annual FES MOT at Queens Square and it was suggested to me that I could be good candidate for Fampridine. This is not a trial and it is available on NHS, so no cost involved. It appears this only applies to Queens Square and your GP, or Neuro can refer you. I declined the offer, because I have strong reservations about the drug, but thought I should mention it, in case you are still interested.
My husband was part of the Fampyra trial about 4 years ago and has had the drug free from the drugs company ever since. His mobility is terrible, so is it doing any good we don’t think so but their is new evidence apparently that it helps with hand dexterity so for now we are continuing with the drug.