Forum

Fampyra?

Who gets to try this? ‘03 October 2011 Author: MS Trust Fampridine, a drug that can improve walking in MS, has been launched in the UK.’ I must be feeling a bit better SO what’s going on with this drug? Who gets to try this? Is anyone we know on it? Take care folks, there is hope, M

Nobody will get this drug because: The Committee (CHMP) noted it was not convinced of Fampyra’s small effect on the walking speed and was not a meaningful benefit for patients. The effect on walking, according to CHMP, could not be linked to meaningful improvements such as better coordination, balance or stamina or increased range of action. We live on in hope!

thought this sounded promising.at last somethjing that might help us ppms ers but once again it looks like we get the shitty end of the stick at least itl give me something to argue about on my yearly visit to useless neurologist

I havent been on the MS site for ages and just read about fampyra - I got really excited till I read these posts :frowning:

Hi there. Tree65 told me that you had posted about Fampyra because I mentioned it in another post. I am about to start on it. It’s sort of part of a trial, but it’s the worst run trial I’ve ever come across!

I’ve got RRMS (I don’t know if that’s relevant or not to the trial) and an EDSS of 6. My neuro is an MS specialist and he gets involved in a lot of trials. He asked me last year if my walking was slow and I said, “Er, yes” with lots of rolling of eyes towards my stick. He said he was about to launch a trial. Anyway, I didn’t hear anything till July when there was a mad panic and then a complete mix up with prescriptions so nothing happened. I finally got 3 months of Fampyra via a private prescription three weeks ago. I’ve had to come off modafinil (2 weeks on half dose, 1 week on nothing). I’ve got to go to have my walking timed before I start too, but my MS nurse hasn’t been in touch yet to organise that.

It’s been approved now anyway, so I’m not quite sure why there are still trials going on. Maybe NICE want more data? I have been told that there may be no more pills once the 3 months are up - because funding hasn’t been sorted I guess.

All I know is that it can increase walking speed up to 25% in about 45% of MSers. A friend has also told me that it is good for fatigue too - which I sincerely hope as no modafinil is seriously taking its toll on me.

Anyway… I thought you might be interested.

Karen x

I know this is a really old thread so maybe no-one’s reading it any more. Just in case anyone is … I started on Fampyra a month and a half ago, because I was struggling to walk, needing two sticks, even round the house. I see a really good neurologist at the National Hospital for Neurology and Neurosurgery in London (I’ve moved round the country a bit and seen several other neurologists, each one about as much use as a cat-flap in a submarine). He suggested Fampyra, plus -Modanifil because I was sleeping so much in the day, -Botox injections for my bladder because I was having urge incontinence in spite of being on Vesicare - and counselling because I was so unhappy about the state I was in. But the truth is, Fampyra is advertised as a walking drug (probably because there are no other walking drugs) but it is a drug that improves how the messages are transmitted by nerves damaged by MS. So it helps everything. I’m back to using one stick. I’m not sleeping much in the day any more (I’ve watched films! I haven’t stayed awake through a whole film for years). My urge incontinence is gone. In fact, I’ve stopped the Vesicare over the last couple of days and I’m still fine. And my walking speed has improved by a quarter. This is an amazing drug. It is also amazingly expensive. NICE is not even planning to look at this drug - because they think it’s just an expensive walking drug? It’s so much more than that. How do I get this message out to the people who decide about what trials are done?

Hi S

More than a little interested in this AND amiloride and phenytoin and these drugs are cheap!!! There are no trials on the go WHY, this surely begs the ? and how about getting the act together (that’s instead of saying please get the finger out) no smileys this is serious. M

There was a thread a few days ago and a guy AndyB gets 4-AP at a cost of £40 per month from california. 4-AP is the major component of Fampyra. Anyway it really works for him. I think it was in everyday living.

Moyna

Quite right Moyna and this is the thread.

http://www.mssociety.org.uk/forum/everyday-living/fampyra-and-postcode-lottery

I have just completed a very successful month trial on fampyra and the difference it made to my quality of life was immense. My strength my walking in both speed and distance as well as comfort with little to no drop foot. I saw my neurologist last week for my second timed walk and I think he struggled to keep up with me. To put it into context , 6 weeks ago , a crutch 2 foot splints and very weak and slow, then 4 weeks of fampyra ( BRILL ) downside is once you finish your last tablet next day back your old self ( POO ). Whilst I am waiting to hear if I qualify for funding I am paying for it myself at a cost of £182:00 for a 4 weak course through Healthcare at Home.

Hi Eric

Who is funding this for you? Are you in Dudley? I’ve heard that people can get it on the NHS there and I’ve also been told (by my MS nurse) that the health authority here in Coventry won’t fund it. I’m paying myself (and can afford it) but I know lots of people with MS around here who might benefit from it but probably couldn’t fund it themselves.

Hi sewing chick I pay for it myself at the minute still waiting to hear about funding , but what I understand is the price of fampyra has halved in price this year and the nhs get it for £180:00 for a 4 week supply. I understand certain places are charging what they want but as for me my neuro sent a script for 4 week supply to Healthcare at home costing £180 plus £2 admin fee who deliver it to your door. I live in the North East, hope this helps.

I’m waiting to have my free trial at the moment. I’m going to stop taking Fampyra for a few weeks, so I’m free of it and then do the walking speed test, and then do it again after being on it for a fortnight. Ironic thing is, I think the Fampyra has stopped working for me. My walking is worse, bladder control worse, starting to sleep lots in the day again. Sorry for giving it such a good write-up.

I stopped taking the Fampyra - sort of involuntarily because I had a horrible vomiting bug and couldn’t keep anything down, not even water. When I stopped throwing up, I thought I would go on with no Fampyra. Soon started it again - my walking was simply terrible. Of course, it could have been a hang-over from the bug, but all the other things that went horribly wrong while I was all were back to normal. Not my walking - needed two sticks, was really slow. Pretty much back to normal now.

Sewing chick I,m a first time poster although have been a casual observer on this site for a few months. Diagnosed with ms in 2007. Having some problems with walking now and thought I would like to try fampyra. Dropped a line to neuro last week but no response yet. I,m somewhat confused by your last post . Are you still taking fampayra and things have got better after your ill period or have you stopped taking fampayra and think perhaps it might have been the cause of your recent illness ? Although diagnosed in 2007 I have had problems since 2001 starting with foot drop on left side. Not seen it mentioned before as a problem but local anaesthetics and any antibiotic seems to make me worse after taking the course. - now avoid like the plague ! Tks ansimo

Hi Ansimo and welcome, if you don’t find out more you can always send a message/question direct! It’s so strange reading your post i too was dx 2007 (Oct) and symptoms had been going on for years. Any dip in health (cold/bug/virus) sends MS to another level. Take care, welcome to our club and be safe M x

Hi Ansimo and welcome…

I was dx in April 2008… but also had symptoms for some years before.

Glad to see you on here,

Pat x

Hell/MS and snow leopard Tks for the welcome. I can still walk around using a stick and drive my car although clutch getting more difficult to operate. The cold weather pains my legs so hoping for some warm weather soon ! Tks Tony

Hi If you get the chance to try this drug grab it with both hands . If you have already read my post here’s an update at the start of the year I was struggling with everything us PPMSers suffer with ,you know what that is . My company have been fantastic with me since first diagnosed 2 years ago but I couldn’t after about 6 months work my usual 40 hours per week and had to reduce to 16 hours sitting behind a desk unable to do the physical demands my job demanded. However since the initial trial I have continued to fund fampyra myself and the benefits for me have been that good I have been able to increase my hours to 32 and do more physical tasks. I do appreciate that not everyone has a positive response but all the recent press about post code lottery I really do hope that everyone with this horrible disease gets the chance to try and improve their quality of life. Good luck.

Sorry if my post was unclear. Here’s what happened to me: Oct 2012 -started on Fampyra Next five months - saw a steady improvement in my walking speed April 2013 - improvement stopped 8th May 2013 - caught a vomiting bug my children had had the week before 8-9-10 May - didn’t take Fampyra and my walkin deteriorated a lot 11 May - started taking Fampyra again Today - walking back to where it was, I’m feeling brilliant having just started on Modafinil - described this on the Modafinil thread on Everyday Living