So I’ve very recently started on Fampridine and so far the only thing I’ve noticed is a bit of a nausea headache, but its early days yet.
One thing though that I’ve already realised is that trying to take the drug on an empty stomach 12 hours apart and 2 hours before or after food is a pain, especially if like me you’re still working, albeit part time and we have set meal breaks in work.
At the moment I take it 9am and 9pm , so my schedule is, a bowl of cereal at 6.30am, go to work, take the tablet at 9am, then have to wait until at least 11am before I can even have a cup of tea or coffee, (empty stomach rule).
In the evening I try to have food by 6.30pm latest, wait around 2 hours, take 2nd tablet at 9pm, but again this means nothing to eat or drink after around 6.30pm, again because of the empty stomach rule.
Surely there must be a bit of leeway with having a cup of tea or coffee ?
The weekends are a bit more of a challenge, as I use this time to try and have a lay in, so if I get up at 9am, take the tablet straight away, I cant eat food until gone 11am.
So I’m wondering if anyone else taking this drug has advice on how they manage the doses.
Thanks in advance.
This site says it can be taken with or without food ?
Hi sorry i cant help - but no tea or coffee? thats insane! i never go 2 hours without coffee unless im sleeping - bit of an addict im afraid. Are you sure you cant have a drink??
On the weekend could you have your tablet before you get up? then you can still have a lie in
Thing is, they have to be 12 hours apart, so if the last one is taken at 9pm the next one day after has to be 9am, so it all has a knock effect.
So even if I take the morning one at 10 am I cant take the evening one until 10pm, and so it continues into the next day.
The consultant said, and the booklet that came with the medication confirms “MUST BE 12 HOURS APART ON AN EMPTY STOMACH”.
So the “empty stomach 2 hours before & after taking the drug”, really does make it very inconvenient.
I’m assuming this means food & drink ?
When you factor in meal times, working hours, weekends, empty stomach, taking 12 hours apart and on an empty stomach, it really is an inconvenient drug to adjust to.
I dont know about this particular medication, but usually if it says on an empty stomach you can usually eat after half an hour or so after taking the medication and you dont have to be so strict with tea and coffee - especially if you can drink them without milk or sugar. Stomach being empty just gives the medication a chance to be absorbed
Cons - Dreadful insomnia (listed as a side effect), headaches shortly after taking, a bit swishy washy feeling short time after taking, having to take on an empty stomach 2 hours either side causes inconvenience.
Currently these side effects outweigh the benefits, so unless theres a dramatic change over the next week or so I’ll probably not continue with this drug.
I used to take it and found the 6 am/pm worked best for me. I may have started taking it just with water but probably got more relaxed fluid-wise the longer I took it. I was that daring, a year or two in, I’d even have a sweetie or two in the 2 hour pm timeslot!
I used to take it and found the 6 am/pm worked best for me. I may have started taking it just with water but probably got more relaxed fluid-wise the longer I took it. I was that daring, a year or two in, I’d even have a sweetie or two in the 2 hour pm timeslot!
At the moment, even though it’s early days, I’m finding that about 2 hours after taking it I get a sickly headache and feel a bit light headed, which lasts nearly all day.
I’m not noticing a dramatic improvement in mobility, maybe, just maybe a slight improvement ?
The worse thing at the moment is the insomnia, it’s really bad, which as you know, not getting good rest isn’t a good thing for MS.
It does say in the booklet that came with the drug that insomnia is a common side effect of Fampridine.
Maybe it’s a case of the body adjusting to it ?
I’m not very good with meds though, I tried Sativex a few times, but just couldn’t get on with it, the side effects far far outweighed the benefits, in fact I dont think it had any benefits what so ever !
I’ve also asked the same question to the manufacturer of Fampridine, but the reply was to refer to the booklet or speak to the consultant.
Yes, thinking back, insomnia was a side effect…but it was more a case of only realising this when, having stopped taking it, I started having a relatively good nights sleep again.
With all medicines it’s a case of weighing up the pros and cons. When the benefit of improved mobility disappeared, courtesy of a broken hip, my choice was easy. Good luck with this for yourself.
Hi, I tried fampridine 2 years ago. At 1st I was excited to be trying it cos a guy I know was on it and he was like someone without ms on it. He walked fast,lots of energy. So I went for the trial and after a day taking it I thought I was walking a bit faster. But I felt like my legs and face were tingling/burning on it. I couldn’t handle that feeling so I quit fampridine. Neuro said there was no side effects but i got that sensation on legs and face. Im disappointed that I didn’t stay on it cos it probably would have good for my walking but only couldn’t handle that side effects.
Well I’m over a week into starting on Fampridine, taking it religiously 9am & 9pm, avoiding food 2 hours before & 2 hours after.
Do I feel that it’s made an obvious noticeable difference ?
In a word NO !
My work colleagues tell me I have a smoother look to my walking, yet I don’t know if I can feel that ?
They might be right as over the past week there may of been the very odd occasion when I felt perhaps not so clumsy or heavy on my feet.
However, I’d be lying if I said there was clear definite improvement.
I also feel that if I had not told my colleagues that I had started taking Fampridine and what the drug was supposed to achieve, they would not of mentioned any difference in my walking.
My sleeping seems to have settled a bit, but the 2 hours of not eating food before & after taking the drug is a right pain in the bum.
Anyway just over another week before the assessment to see if theres a 20% improvement, I wont be holding my breath though !
Jactac you won’t notice much I think but i did notice I had more energy and felt bit stronger.the assessment will tell if any improvement in walking speed,it may be small but may be enough for them to approve it for you. It only works in 20% of people I was told. I know people on it for years and look great on it. That’s the 1 thing I hated about it is the no food 2hrs before and 1 hour after food I was told I think was definitely to worst part. When I was told I couldn’t have a coffee before it is knew I would quite it. Best of luck with it and thanks for letting us know your experience on it. Jimmy
I don’t think a month would make a lasting difference. Stopping after long term use, more likely, after all the drug masks the inevitable progression of a progressive condition…
You will go back to your baseline after stopping it so if your ms was progressing you will go back to that state. But if you are progressing slowly then you’ll revert to that. It doesn’t speed up progression. Prof g has a few things about it on the barts blog. He says that responders keep responding to it so if you do well on it then you will. I regret stopping it as my legs are like tree trunks these days.