So it looks like finally in England this drug has been approved, so I’m a wheelchair user, poor balance and I really hope I get a chance of trying it, good luck to anyone who does,
Jean x
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Hi Jean
I have everything crossed for you xx
Pam x
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When the drug was available at UCH in London, you needed some ability to walk 25 feet, with an aid if necessary.
It seems you must have EDSS between 2-7 to qualify for treatment. You can check here - Online EDSS assessment
Hopefully, there will now be bit more flexibility, because if you are a responder the drug can improve balance and possibly help with transferring.
Fampridine recommended for use in England | MS Society
I hope your nurse is open minded.
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Thanks @whammel, I will check that out, I would really like this to be right and if and when I hear from my MS nurse I will let you know,
Jean
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Thanks @Skippy16 , I really hope me and so many others quailfy for this, I will keep you updated,
Jean x
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I checked this out today and my MS Team said they aren’t set up for it but will contact me when they do. I’m PPMS with a 6.5 and walking ability is my dominant symptom contributing to the score. I can still manage 25’ with a stick.
You may find other English NHS Trusts are not yet ready for the onslaught of demand - whilst other regions have already approved it, it seems the switch in England has been quite quick to the extent that there won’t be budget for the treatment until the new financial year in Apr’27.
Expect also the arrival of generic Fampridine at much lower cost than original Fampyra. Perhaps that’s NHS England have been waiting for?
See here the Clinical Commissioning Policy
Thanks for your reply @GCCK To be honest I did wonder if they would be ready yet, shame really, I’ll await my call and I have a f2f on the 3rd of August so may get more info there.
Good point about the budget side of things, sad really there was I thinking I’d be walking again in no time 
Jean
A lot of the emphasis on Fampridine roll-out has been on exercise. If you can’t walk 25’ with the aid of a stick, frame or rollator, get in training now! I’m not saying that to be cruel but if they have eligibility criteria, they may be inclined to use them.
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Hi @GCCK Yes I’ve been reading about this and I am concerned I won’t get it, I have a small walking plate and I’m going on that, my BIG problem with walking is my balance, or lack of it, I suppose only time will tell.
Good luck to you and any others who want to go for this,
Jean
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Hi Jean
From reading the various documents, the pivot on eligibility seems to be the wheelchair because the chair makes you an immediate EDSS7. Whenever I’ve been to hospital in my electric chair, I do so because the hospital is too big a place to negotiate without the chair. However, I do the tests out of the chair. For me, a single stick is still viable but if you need 2 sticks, crutches, a walking frame or a rollator, those are allowable too. Can you balance satisfactorily using a 4-wheel rollator?
Graeme
Hi @GCCK I can when I’m stood still and have a wider gait, but as soon as I start moving my balance goes and I want to fall to the right side, this is why my MS nurse suggested the electric wheelchair at home, I’ve used a mobility scooter for years outdoors, or hubby pushes me in a manual one, so I’m not sure how I’d go on, couldn’t do it with 1 or 2 sticks, or crutches 
But I’m still determined to ask and at least get assessed when and if the time comes.
Jean
Just a thought though, isn’t it supposed to help with balance ?
Assuming you are one of the 40% of responders, a 20% improvement is possible. In my experience that definitely included balance. More importantly, the additional boost allowed me to work more on core strength, which in turn helped improve balance.
Unfortunately, after a couple of months the drug also gave me the rather unpleasant side effect of trigeminal neuralgia, so it’s not without some risk.
However, it’s a good drug if you are a successful responder and hope you get the opportunity to try it.
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Hi @whammel Well I didn’t realise you’d already taken this drug, so it’s good to know how you went on, although I#'m sorry it didn’t work for you and has left you with trigeminal neuralgia
I myself read about bad side effects, it said in some it had caused seizures, quite frankly I don’t want anything like that, as things are already bad enough, so which way to go if I’m eligible. I did the EDSS test and looking at that I think I’m 8 anyway,well I’ll just have to see what they say and me and my hubby can discuss the pros and cons, honestly why couldn’t it be more straight forward.
Take care whammel,
Jean
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Taking Fampyra was a bit of a last resort and it did help get me back to the gym, so not all bad news.
The patient information leaflet puts the risk of seizures at 1 in 100, which isn’t too bad, unless you are unfortunate. There is quite a list of other possibilities though.
I agree it isn’t exactly straight forward, but it only takes a few days to tell if it works and expect you would be monitored properly throughout the trial.
All the best if you decide to push for a prescription.
Fampyra 10 mg prolonged-release tablets - Patient Information Leaflet (PIL) - (emc) | 4763
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thanks for the onfo @whammel Very interesting, it’s good to have a heads up, I’ll update this post if and when I try it, thanks again,
Jean
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Sounds like a catch22!
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