Forum

Fampridine

Hello,

Over the years I have been a sporadic contributor to the forum. Just recently the Queens Sq Neurological hospital in London offered me Fampradine. I looked on the Forum but could not find any information that has been recently posted.

So folllow this link to find out how things got started for me. I will let you know how things progress and whether or not I get it through my website. Here is the link [Link removed by moderation]

The drug has now been approved by NICE and should be available. Do any of you use Fampradine regularly or has it not worked and what do you think of it

Thanks,

Patrick

[Link removed by moderation]

The Barts Blog did comment on the trial results and worth reading. Multiple Sclerosis Research: ClinicSpeak: fampridine trial results

Hi Patrick

Here is a different link to the same initial article, but with an update by Professor G: Multiple Sclerosis Research He seems to be a bit sceptical about it, and this is the impression I’d had. Because it doesn’t slow down progression, once people stop taking the drug, some people’s progression was actually potentially worse than it would have been without it. The reason being that you might end up overworking the axons. So I think that for some people it works wonderfully. And in some people it didn’t work initially, but then they tried it again and it did work. But the jury is out on whether it’s a good drug in the long term. Dr Giovannoni is suggesting a pre and post Fampridine study to check this out.

Perhaps what is needed for you right now is some users of Fampridine to tell you their experience of the drug. I asked my neurologist about it a couple of years ago and straight off he said ‘it won’t work for you’. I’m not sure why; it’s possible that it was because of foot drop? I honestly don’t know if that’s what it was, it was my assumption at the time, but don’t let that put you off.

Sue

Hi Patrick I have used the drug for a few years and I seem to be getting on really well with it, you state “The drug has now been approved by NICE and should be available”. Is this true? Do you have any links to show this approval? I am just keen to see this as I pay £200 a month for my supply, as it is not NICE approved. Keen to see your reply Charlie

Hello,

see https://www.mstrust.org.uk/a-z/fampridine-fampyra under the licensing and availability section.

Here is the text : This research was completed in 2016 and in May 2017 a standard marketing authorization (a full licence) was granted.

Patrick

[Link removed by moderation]

Hello,

I am hoping to get some feedback on my website of people who have used Fampridine. My assessment is on 22 Dec and it is based solely on walking speed but apparently it can improve other areas affected by MS.

My test will be with a zimmerframe and to be honest I am not too optimistic that even if the drugs helps me I will be able to walk significantly faster with a zimmerframe.

I would much rather it could be done using a rollator but no rollator available at Queens Square. That is another complete story which I will reccount in another post.

Patrick

[Link removed by moderation]

Hello,

I would be very grateful if your thoughts on the success and failure of Fampradine could be posted on my website for the article. Just go to [Link removed by moderation] and put your comments in at the end.

Patrick

[Link removed by moderation]

I think the crucial bit you did not include was the following

“In 2014, the NICE MS Clinical Guideline 186 concluded that fampridine was not a cost effective treatment for lack of mobility in MS. Consequently, it is not recommended for use on the NHS in England and Wales. In Scotland, fampridine is not recommended for use within the NHS as the Scottish Medicines Consortium (SMC) has not received a submission from the manufacturers of fampridine. Some people with MS opt to pay privately forfampridine. The cost is around £4,700 per year (at October 2014).”

Your statement is not quite true. It is not an approved and funded NHS treatment.

Patrick

Your statement is not quite true is it?

"In 2014, the NICE MS Clinical Guideline 186 concluded that fampridine was not a cost effective treatment for lack of mobility in MS. Consequently, it is not recommended for use on the NHS in England and Wales.

In Scotland, fampridine is not recommended for use within the NHS as the Scottish Medicines Consortium (SMC) has not received a submission from the manufacturers of fampridine.

Some people with MS opt to pay privately for fampridine. The cost is around £4,700 per year (at October 2014)."

It is not approved for NHS Funding.

Charlie

Hello,

See earlier reply but to repeat. According to the MS Trust site https://www.mstrust.org.uk/a-z/fampridine-fampyra

Read in the licensing and availability section. I quote

‘Fampridine was granted a conditional marketing authorisation by the European Medicines Agency (EMA) in July 2011. A conditional marketing authorisation is granted when a medicinal product is considered to fulfil an unmet medical need and should be made available despite the fact that further data are still required. The licence required the manufacturer, Biogen Idec, to carry out further research into the benefits and long-term safety of fampridine. This research was completed in 2016 and in May 2017 a standard marketing authorization (a full licence) was granted’

Its very recent and no one has shouted about it from the roof tops.

Marketing authorisation is not NICE approval Patrick. However, it tends to be that lots of treatments and drugs are available at Queens Square that aren’t necessarily through other neurologists. Which would be the reason you can get the drug on the NHS wheras Charlie can’t.

Sue

Thanks Sue

Patrick - The complete set of word from them link you provided.

Licensing and availability

Fampridine was granted a conditional marketing authorisation by the European Medicines Agency (EMA) in July 2011. A conditional marketing authorisation is granted when a medicinal product is considered to fulfil an unmet medical need and should be made available despite the fact that further data are still required. The licence required the manufacturer, Biogen Idec, to carry out further research into the benefits and long-term safety of fampridine. This research was completed in 2016 and in May 2017 a standard marketing authorization (a full licence) was granted.

In 2014, the NICE MS Clinical Guideline 186 concluded that fampridine was not a cost effective treatment for lack of mobility in MS. Consequently, it is not recommended for use on the NHS in England and Wales.

In Scotland, fampridine is not recommended for use within the NHS as the Scottish Medicines Consortium (SMC) has not received a submission from the manufacturers of fampridine.

Some people with MS opt to pay privately for fampridine. The cost is around £4,700 per year (at October 2014).

So yes I agree totally that it was granted a CMA in July 2011, but as of 2014, guideline 186 concluded that it is not cost effective and therefor it is not available on the NHS… Please do not post items that are only half the story.

Discussion closed.

Only this week my MS clinic mentioned this drug to me, saying there were good results from it, however, they did say there were some serious side effects such as epilepsy. I had never heard of it until now. They’ve said that they had patients doing very well on it, mobility wise, but some months into taking the drug had an epileptic fit and then had their driving licence removed for 12 months, and also had to come of the drug !

Also mentioned was that it is ONLY available on private prescription and the weekly cost could be as high as £150 ?

Hello Charlie,

Yes okay it was not recommended for use in 2014 but things had changed by 2017.

A licence was not issued for Cladribine a few years ago cos of deaths from cancer. Funny how that has been disproved and oral Cladribine is now a drug available for people in early stage MS.

Attitudes change and you have the chance to go with the flow. Fabridine enables some people to walk faster but not more safely and that is why it was originally not granted a licence. Suddenly mobility is important as is quality of life. It is your choice

Hello Jactac

Re epileptic fits, A single 10 mg pill MUST only be taken every 12 hours and that is vital. Take it more often and the chances of an epileptic fit loom on the horizon We hear a person taking Fabridine had an epileptic fit but did we hear the whole story?

Sorry Patrick but you are not correct, Nothing has changed, if it has please provide the NICE approval for NHS funding details, oh sorry you can’t. It is NOT available on an NHS funded prescription in England today.

Totally agree with Charlie. And it’s not attitudes that change over time, it’s drug trials which prove effectiveness, or the reverse, and the cost of the drug. NICE weigh up the benefits to patients against the cost of a drug. If it is cost effective and that cost is worth the benefits, it gets NICE approval. If not, it doesn’t.

Sometimes NICE make it clear that a drug or treatment is optional for a CCG to decide for themselves whether it is particularly suitable for the patient. For example FES, it is not mandatory that a CCG fund this. Other treatments and drugs are mandatory; the CCG must agree to provision of the drug or treatment. At this point, NICE have not made a decision on the cost effectiveness of Fampridine.

Sue

Patrick,

I dont really want to get into a debate as I know very little about the drug.

I can only tell you what my MS clinic have told me, which is what I mentioned above.

I’m not suggesting that the side effects of epilepsy is too much of a gamble, in fact I would personally try the drug given the chance, however I wouldn’t be able to afford to pay for private prescriptions, which was the other subject that you say is incorrect, yet they (MS clinic) and others here have confirmed it to be the case…

Touching though once again on the epilepsy side effects, obviously I would not be privy to, as you put it, “the whole story”, simply because information like that is confidential, however, when my MS clinic advise that they have seen patients who have never suffered from epilepsy suddenly develop it after taking a drug that is known to have this side effect, then for me that in itself tells a bit of a “story”.

Fampradine has been authorised but, as far as I know, it is only available from the National Hospital for Neurology and Neurosurgery, Queen Square, London. They pay for the prescription if there is a sufficient improvement in your walking speed. The assessment is made 2 to 3 weeks after getting 4 weeks worth of the drug from Biogen, the manufacturer/supplier.

I took it for several years. At first it improved my walking and other symptoms as well. But after a few months my walking got worse again and when I tried stopping the fampridiine it got even worse. After 2 or 3 years, the fampridine started disturbing my sleep and I came off it. I still wonder if the fampridine was responsible for some of the precipitous decline I saw in my walking and I wish I had never taken it.

I actually think it’s wrong that fampridine has a license at all, because no-one has looked at the long term effects and MS is a long term disease. My neurologist didn’t mean to harm me when he prescribed this drug. He may have done me unintentional harm and that is what the licensing is there to stop.

1 Like

Hi Patrick I am afraid I know nothing about Fampridine but I hope you get some valuable feedback as it is really difficult to know whether to try these drugs. I note that you mention Cladribine and it has been suggested I consider a trial for this drug (if accepted) due to the fast progression of my MS. I did not get any replies when I asked if anyone had experience of using this drug. I have read the Barts site but it is always good to hear from someone with experience of Cladribine. Hope all goes well which ever way you decide to go. Sue