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Fampridine anyone taking this ???

iam just being put on Fampridine was wondering if anyone else has had this and there experience with this drug .

thanks in advanced .

Hi Skipchaser, I have been on Fampridine for 3-4 years now, private prescription that costs me circa £200 a month.

I have only good things to say about it, no side effects as such, makes my walking clearly better, so to me, £200 a month (my DLA money) is worth it.

There are others on the forum that would counter my opinion and advise against it, there are others on the forum who take it on the NHS so I assume no cost/little cost.

Have a search on the forum for other posts and see what you think.

Charlie

charlie ,

thank you for an answer as cant seem to find much from people who have and are taking it . its sounds like a god send and works well .

well worth the money then .

thanks

ian

The search facility comes up with quite few posts on the subject. I hope you are a good responder.

https://community.mssociety.org.uk/forums/everyday-living?title=Fampridine

https://community.mssociety.org.uk/forums/everyday-living?title=fampyra

Ian, for me personally, yes.

But have a good read of the links Whammel provides below, there is certainly differing views across the forum.

charlie

Well I’m intrigued. Having read some of the posts in those links, I’m asking myself why has my neuro never had a discussion about this with me?! Poor, almost no, mobility is my main problem. It’s available as a private prescription in Ireland. I’ve told her in the past I’d take ANYTHING if there’s a chance of it helping mobility. I never read anything about fampradine because I thought it was your regular DMD. Since my dx changed to ppms and I stopped Techfidera, I figured that was it in medication. I’m seeing her in August and I’ll be having words!

Poppy,

Perhaps your Neuro had already satisfied himself/herself that this medication wouldn’t work for you ? (tried a Fampridine-based drug a couple of years ago and after initially improving balance and mobility (for first week only), it severely affected the mobility issues I was experiencing at the time, and because - like many of us - it made limited mobility significantly worse.)

Looking back, I wish my Neuro had warned me beforehand instead of being unrealistically positive about something that could have such a detrimental affect if it wasn’t suitable - and it wasn’t suitable for me at all !!

There’s little doubt that it is fantastic for some, just don’t assume that when something works brilliantly for some, it’ll be just as effective for you !!

Dom

Yes Dom, I understand that of course. From my understanding it may help people with any “type” of ms…? And even if it does nothing to help me, I would like to have the option to try it for myself.

I asked my neurologist about it a few years ago. He straight away said no, it won’t help you.

I wonder whether some neurologists had their suspicions about the drug quite early on. There have been quite a lot of people who’ve found initially it worked, then stopped working. And ultimately had a negative effect on their walking ability. As Dom (and others) have found.

This was the view (slightly old now) of the Barts Blog: Multiple Sclerosis Research

​It seems people are divided into ‘responders’ and ‘non responders’. The question is whether it increases the rate of progression. The links Whammel has put on shows that people who’ve taken it fall into both groups. And the jury appears to be put as to whether it can increased progression.

Sue

Following a Private appointment with a Neurologist, not my NHS one, I have been prescribed Frampridine.

First month is free but then I have to pay…

Any advice from people already taking it?!

Obviously, I shall read the ‘Patient Info’ that comes with medication, but advice from those already on it would be greatly appreciated.

Many thanks x

Seems like a .various selection of views on this subject …time will tell I guess but good to hear about it .

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Hi,

I started Fampridine in January, 1st month free. My walking speeded up a little bit and I stopped falling down. (previously fell at least once a week). Costs about £185 per month. Has to be signed for so I get it sent to work.

Has to be taken 12 hours apart, 2 hours before or after food. I take mine 10am/10pm.

Did come off it for a while, states no withdrawl symptoms, but found my walking much worse than it was before I started taking it, so went back on.

Was told about the drug in 2010, thanks to my MS diary for that info! Mind walking was bad before I started taking it in January.

In hindsight probably wouldn’t have started it as in the long run my walking has deteriorated and use a scooter most of the time and get Enhanced Mobility , Standard Living (which pays for it) so could have saved myself some ££.

Mind hindsight with MS I would have done so much more with my life…

x

I think the difficult one on this subject, and this is where I sometimes think maybe I would have been better off without it, measuring before taking it and then measuring shows an increase in speed, stop the drug and then you slow down, but with SPMS you would have been getting slower anyhow so you can’t compare apples and apples. I don’t know if I was better without it or not, but I do know for sure, if I now stop I am considerably worse. Charlie

I’ve been on Fampyra for nearly 5years now. It has been brilliant. If I forget my morning pill I can walk but very, very slowly. On fampyra, I can jog. I get it free because I live in north west Spain and they are humane in their treatments. I’m waiting to start Tysabri. I was reassessed and the head neuro told me that my ms is aggressive but not progressive, thank goodness. I was hoping for Lemtrada but as I already have hypothyroidism and some kidney problems it was not advisable for me to try it. I was on Tecfidera, but it destroyed my immune system and it didn’t work.

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Hi lapreguiceira

I’m glad it works for you I’m due to start on it in a couple of weeks so I’m hoping it will do what it’s done for you so fingers crossed .

Looks like it works in different ways with people but the mechanics of it all sounds promising what it does so big fingers crossed for me !!!

Glad Spain has got there backside in gear about you getting it through your medical service and they tackle this condition head on . Have been waiting for nearly a year for just a year to what I have as no one really wants to put there hand up to say I have MS …

All I’m after is a direct answer and what we gonna go about it !! Not hide from it and keep me hanging .as they say …life goes on !!!

Thanks for the reply

Hi Dom. Saw my neurologist today and asked about Fampyra. I should have read about it a bit more i think. I was informed it would be of no use to me. There needs to be a reasonable amount of mobility for it to be of any help. Something like being able to walk 300 meters or something. I can’t manage 30 meters. Less than that actually. Hopes dashed again. :frowning: