Forum

Fampridine

Hi, has anyone had Fampridine and are having difficulty getting it? I have been on it since about July 2011 and it works really well for me doubling my walking speed (still poor but better than it was). I was written a prescription by Dr Burness on the Isle of Man a few weeks before we moved to Anglesey. There was a delay in getting it before I moved but now they have written to tell me as I have gone I won’t be getting it. The ms nurse over here has told me they definitely won’t prescribe it but I haven’t seen my new Neuro Dr Jacob yet. I normally only see a Neuro once a year so goodness knows when I will see him. My walking is really suffering now without the tablets and I was wondering if anyone knows if they can be bought anywhere?

Cherrylady,

As far as I know, you cannot get this medication (Fampyra) through the NHS at present. It has to be prescribed privately - which will mean a cost of at least £200 per month out of pocket (plus the fee for the private neuro’s consultation).

Even though this cost is roughly half what was being charged before, it’s still a major outlay for those of us that have had to stop working on medical grounds, and no longer have an income anywhere near what we used to have !!

I’m now in week 3 of a free 4-week initial trial, having been assessed by a private neuro as a suitable candidate. So far the minimal improvement in walking speed seems to be wearing off, and I certainly don’t feel that it’s worth £200 per month (…which is a major chunk of my income) for the tiny help it offers .

I also gather that once you come-off the medication your walking is likely to be a bit worse than it was pre-treatment - I sincerely hope this is a temporary thing ?

Cherrylady, if you do find an NHS trust that can currently offer this, do please share it with this forum …it may be useful info for many, however I won’t be holding my breath !!

Best regards,

Dom

Three months on Fampyra. Walking, fatigue, bladder all improved. My GP gives me a private script which I send to BUPA Healthcare. £191.10, delivered.

Three months on Fampyra. Walking, fatigue, bladder all improved. My GP gives me a private script which I send to BUPA Healthcare. £191.10, delivered.

Thank you both for your replies. I think I will just have to get used to not having Fampridine for the time being, until something changes. I must say it worries me that walking could be impaired when you have been on them then come off. My walking is shocking when I am off them but is it worse than before I started them? I don’t know. Do I want to take something which may affect my walking in the long term? I don’t think it has been around long enough to know the answer to that, and it may affect people in different ways. As Dom says, £200.00 per month is a lot on a limited income, a lot for most people methinks. £191.00 for a 3 month supply sounds a lot better, that is, if you have BUPA. I will certainly let you know of any developments. Sorry about the lack of paragraph spacing in this, but when I press Enter nothing happens and if I press Tab it takes me to the bottom of the page! Kind regards from technophobe Cherrylady.

Its not 3 months for 190. Its 190.10 for 1 month. My GP has prescribed it but Bupa pharmacy needs a patient responder I.D scheme form as well signed by a specialist not just a GP to enable them to give me the first month free .

Have emailed my neurologist to see if he will fill in the form and send it on .

My guess is that money will come into play here but I’m not going to see the neuro just so he can wet his beak and have me pointlessly trying to hop round his room.

For those getting a private script from their GP, make sure he doesnt write it on a nhs script paper, they don’t like that either !!

As far as the benefits are concerned, Ive looked into it as thoroughly as possble. From anecdotes on you tube it looks promising. One big question I have is that the makers say that the benefits (if you are a responder) last up to 5 years. Why 5 years ? If as they say its a potassium channel blocker and effectively its stoppng leakage of potasum from the nerve cells whch supposedly allows the flow of electrical signals to the nerves from the brain, why would that stop working after 5 years? And of course where does that leave you ??

So basically its a gamble but one in the absense of anything else useful, I’m prepared to take !

hi

i was really upset to be told that i couldnt have it.

john - thats useful, maybe when i can afford it eh?

carole x

Nw1 The drug company didn’t say that Fampyra stops working after five years. They have only just completed a five year trial and found that it was still just as effective after five years. There is no reason to expect that it will ever stop working. John

Hi John,

Great news that you’re continuing to benefit from Fampyra in so many ways …well chuffed for you !!

In fact, your progress report was the thing that helped me decide to try this medication. Wish my results were as positive as yours, but I guess I’m just one of those people for whom Fampyra isn’t as effective ? (…very slight improvement in walking speed for sure, but pain, hand-tremor & headaches have increased since I started trying this).

I’ll be coming to the end of my 4-week trial tomorrow, so I’ll be interested in (…and monitoring) how I do/am post-Fampyra by comparison ? (…hope that makes sense?)

Thanks to everyone for their comments

Dom

Thankyou to all who have posted/replied on Fampyra. lts like having our own ‘trial’. l am considering trying for it.

So its good to hear from personal experiences.

Also thanks to all people posting/replying re fampayra. I wrote to neuro approx ten weeks ago asking to try a free trial of fampyra and if it was of benifit I would pay for monthly supplies. Neuro wrote back saying he was happy for me to try it but alas no subscription given. Rang his secretary and was told he was looking into it. ( bit like a hole in the road and the council ) Am very annoyed as I’ve worked all my life fought for queen and country and never claimed any dole money ever and now I’m looking for some help. ! johnh - very pleased that fampyra is helping you. Was wondering what type of ms you have ?

You have all probably seen this already but I just found this “In April 2013, the NHS Commissioning Board, which funds specialist services inthe NHS in England, issued a policy statement in which it said “Fampridine is not considered to be a cost-effective use of NHS resources.”” here http://www.mstrust.org.uk/atoz/fampridine.jsp

Ansimo I’m supposed to be primary progressive, however my GP prescribed a low dose two week course of oral steroids. They’re not supposed to help pp patients, but it felt like a cure. Mobility, pain, fatigue all improved dramatically. So, maybe I’m relapsing remitting after all!

johnh. Wish I had your doctor. Best of luck. Puddinglover. Apparently fampyra benefits approx 40 per cent of patients but there is no cost to the nhs. You can get the first month free from the manufacturers and I said I would fund the recurring monthly costs of £180 if fampyra was of benifit to me. At the moment this is probably the ONLY drug that gives some benifit for ppms and patients are being denied it even if they are prepared to pay for it ! Something’s wrong here surely.

Something is wrong - when you consider the drugs we are prescribed that have nothing whatsoever to do with MS - AND - they can cause terrible side-effects. So how can something that can benefit 40% not be cost effective. These results are better than many of the MS drugs.

l have been on a waiting list for an appointment at a hospital where l am hoping to get a WalkAide Fes. l have had foot drop for 30yrs. And l have tried everything - and would just like to ‘trial’ one of these. l know l have very little hope of getting it funded.

Now l have decided to contact a private company - you can’t put a price on being able to walk safer and be better balanced.

At least l shall be able to find out whether it will help.

Fampridine was going to be my next step - but l can’t afford both.

I have just completed a trial on Fampyra and have done my timed walks with my physio and MS nurse. I am pleased to say that I am walking 40% faster and I am definitely a responder to this drug. I am hoping that it will help me to walk further as well, although I have been told not to do too much too soon. I am going to have weekly physio sessions now which should help further improvement. I think that this drug could improve the quality of life for lots of us with M.S. I am looking forward to hopefully getting out for a little walk instead of being stuck indoors (unless using my wheelchair). I have to pay £192.00 per month now for the Fampyra but I think it will be worth it. I am hoping that if they can see more and more people that are responding to this drug and the improvement that it can bring to quality of life, they will eventually make it available to all on the N.H.S. Amily x p.s. Ansimo, it took me 12 months to persuade my neuro to give me a private prescription for Fampyra. Don’t give up, keep pestering him and his secretary. Also, there is another thread currently running on the PPMS board regarding Fampyra that people might find interesting.

Money , money , money, its all that concerns everybody these days. Fampyra has come down in price but at the moment they’re finding out how many are prepared to pay the highest cost they can get away with. As for neuro’s not responding, mine hasn’t even not even an aknowledgement, no money in it for him and all he has to do is sign a form.

Think, if fampyra does actually work for 40% of suffers, that would be like losing 40% of there other drugs business, SHOCK HORROR. The last thing any of these ‘health proffesionals’ want is a cure or a remedy for MS that actually works. Hence no NHS funding and neuro’s doing their utmost to avoid even signing off a free trial !! Absolutely stinks !!!

Hi Amily , would you mind letting me know where you can get Fampridine privately? I am looking at all avenues. My doctor is trying his best to find a way to get it through my new Neuro but if all this fails, I would be interested to know where it can be sourced. My GP has said he will write me a private script but hopes it will not come to that. Kind regards, Kathxx

Kath (Cherrylady),

Have you read the thread about Fampyra in the ‘Primary Progressive MS’ forum ?

It says that the initial free trial can only be prescribed by a specialist who would also be expected to monitor the patient’s progress (…or not !!)

I completed my 4-week free trial on 13th September 2013 and my walking speed, foot-drop & balance are now worse than ever. I’m sincerely hoping that this deterioration will only be temporary.

Certainly try the medication out to see if it helps you, but do please be aware that - should you conclude the benefit isn’t worth £200 per month - your walking may be adversely affected if you decide not to continue with it !!

Dom

i was told to get a private neuro to prescribe fampyra

just hoping i can get some cash together first

carole x