Try Shift.ms, as there seems to be a few posts over there. Shift.ms | Forum, Community & Support For Those With MS
Thank you. Sue
About the end of 2013 my name was put forward for a trial of Fampyra (AKA Ampyra, AKA Cladribine).
I heard nothing and asked - I got the âno fundingâ story.
Within a few days, every PCT in the South of England withdrew funding.
It was still available on a âfirst month free - pay thereafterâ basis, and a neuro was very keen to write me up for it.
I looked it up under the Ampyra name and said âNo wayâ
All the results came out the same way:
The chance of a major improvement in my walking (EDSS 1.5 at the time) was 11%
Just remember that Queens Sq are part of a teaching hospital trust, and as such can run trials using non NICE Approved drugs.
I hope you are part of the 11 %
Geoff
Also, if you put Cladribine in the search box on this site, you will find my experience described in detail. It was pretty bad - in short, I had a very disabling relapse a month or two after my first two rounds of Cladribine. I wonder now if that was because I was on Gilenya until a month before my first dose.
Fampyra and Cladribine are NOT the same drug. I can say this for certain because Iâve been on both of them. Fampyra is a drug that helps transmission of nerve signals (at least in the short term). Cladribine lowers your T cell count and the idea is that when your body makes new T cells, they no longer attack your myelin. Didnât work for me, as I said above.
Sewingchick is of course correct. So I wondered what had happened.
The first mention of Cladribine is Whammelâs post #21
So, my comments in #24 should read Fampyra (AKA Ampyra, AKA Fampridine).
And Fampridine is what Patrick asked about in his original post.
Geoff
Patrick mentioned Cladribine in post 14 and I am sorry I might have confused you by mentioning it. Sue
So I did what I should have done: read the whole thread from start to finish.
To me, this has a strong feeling of a marketing ploy by Biogen Idec to get Fampridine approved by NICE.
They are not interested in the long term safety - a few years at full price will generate a lot of revenue.
SO:
About 1/3 of those who try it have a bad reaction.
Another third have no reaction but show no performance increase
Of the remaining third:
1/3 show only a slight speed increase
1/3 show only a moderate improvement
1/3 show a major improvement
What Biogen want is a trial that involves the last two groups (an 22% sample) so that they can demonstrate a range of improvement but one that is generally very good.
I doubt very much if Queens Sq would pay for a regular prescription for the trial participants, but I can believe that Biogen will supply what costs them coppers to make if they get the results that they want.
I see on Patrickâs blog that he was one of the 11 %. Knowing how research projects are costed, I see no reason to change my view that this is a trial designed to get a particular result.
Geoff
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Queenâs Square donât pay for a single tablet - the person who wants it has to pay.
Hello
All I can add to this is that I do not pay for my Fampridine and the physiotherapist told me that the funding for the drug is met for totally by Queen Square NHNN.
The whole issue of Fampradine was first mentioned to me in mid 2017 when the drug gained approval. At the moment NICE have not given it their seal of approval and it is not available in certain parts of the UK.
Following my FES MOT at Queens Square today, I can confirm that Patrick is quite correct and I was also offered Fampridine on the NHS. It seems this offer is unique to Queens Square and not part of any trial. Apparently, your GP, or Neuro can refer you.
I declined the offer, because I have strong reservations about the drug and really donât fancy the chances of speeding up my decline, but others may take a different view.
Hopefully, Patrick will pop back and give us an update.
I have also recently been offered Fampridine on the NHS at Queen Square. I believe the offer was triggered by the deterioration of my walking speed. I have just changed over to a dual 2-channel FES on a six week trial so I decided not to take up the Fampridine offer. I was also worried about any decline if I decided to stop taking this drug. However when looking at the Barts MS blog and seeing some amazing results from patients taking this drug I did wonder whether I had made the right decision.! Sue
I agree the possibility of a 20% increase in walking speed is not to be sniffed at, but I have asked Professor Giovannoni directly and he wasnât backward in voicing his concern. Do a search on this forum and there seem to be a few people that have had bad experiences, so happy to leave it for now, as I still consider I have something to lose. Obviously a great drug if you are a responder, but seems clear that not everyone benefits and decline is a real risk. Hopefully, the dual channel FES will help to build up some muscle strength.