Hi I’m new. After two years of tests was finally diagnosed with PPMS 2011. Just as I retired. Went into deep depression and anger. Walk with rollator indoors slowly but wheelchair needed outside. Anyway I started Fampridine over a month ago. It only works for 50% of us. At first couldn’t see any change but gradually did. My speed (if you can call it that) is 25% quicker but can’t walk without my freewheeler. My balance is almost nil. Fall over about three times a year, broke ribs and dislocated shoulder. So hope my balance improves. Only side effect effect so far is I can’t get to sleep. Anyone else take it? Heard today about the new drug on news today but no doubt NICE won’t approve it as in Frampridine. Nearly £200 a month but if it improves a little its worth it. Regards to all Val
I took Fampyra for two years and experienced similar benefits. In November last year I had a seizure and woke up in hospital. Paralysed. Kept in bed for 4 weeks and treated for epilepsy . My wife then persuaded my private neurologist to visit. He immediately diagnosed that the seizure was a side effect of Fampyra . No treatment other than stop taking the drug and physiotherapy. Three months in the rehab unit before I could stand and take a few steps .
So, Fampyra caused me to be hospitalised for four months. I’m still not back to where I was before the seizure .
Be warned !
Hello Val
Yep - I take it - it doesn’t slow progression so the speed I walk is no longer quicker than since diagnosis. Unfortunately NICE think it is all about the speed so won’t fund it - any improvements elsewhere are irrelevant to them and the calculation they follow as to whether a drug is cost effective. I share your philosophy re the £200 a month for a little improvement but still get miffed that I have to fund the only drug that helps me!
There have been other threads on here about the drug which you may find useful too…varying opinions
Higgs
That’s frightening I’m now unhappy about taking it!
We have had more reports about this drug making mobility worse. This is why it has not passed NICE requirements. On some of facebook groups re MS - many peope buy theirs online. Fampyra - or Ampyra in US - can be bought much cheaper then through your pharmacy. Fampridine is similar but slow release.
l was interested to try it a few years ago - but heard quite a lot of distressing reports about it so decided not to.
I take it.
Actually, it wasn’t passed on economic grounds, not concerns about its long term effects:
https://www.mssociety.org.uk/ms-news/2016/11/fampyra-‘not-recommended’-nhs-scotland
The jury is out on whether it has a detrimental effect on walking - the idea came from the Barts team if I remember rightly, but they recently reviewed a study suggesting that Fampyra also protects hand function:
http://multiple-sclerosis-research.blogspot.com/2016/11/thinkhand-researchspeak-are-you.html
And yes, it does carry a 1 in 100 risk of seizure - but it’s not a Smartie, it’s a potent drug for a serious condition. And that doesn’t mean if you take 100 tablets, you will have a seizure, risk is far more nuanced than that.
So, it’s a case of you have to make the decision about whether you’re prepared to take the risks and get the benefits.
It’s not a DMT, so it won’t stop you getting worse, and when/if you stop, your mobility will drop back to where it would have been if you’d never taken it (and bear in mind, your mobility has probably got worse while you’ve been taking it, so it’ll feel like it’s a lot worse) - and if you ask me, that’s where this idea that it makes your walking worse comes from.
But ultimately, it’s your choice. There’s lots of posts on this forum about it, some good,some not.
Jo x
Sorry, the “some good, some not|” comment at the end was referring to people’s opinions of whether the drug is good or not, not the quality of the posting!
Jo x
Sounds sensible thanks I’ll read the links. It’s a case of you pays your money and take your choice. My next lot have arrived will carry on but nervous!
I have been on Fampridine for 2 years I had to say I would take responsibility for taking the drug AND not sue the Consultant. Very serious stuff and not to be taken lightly! My walking speed improved or more than a year, I now have drop foot which has caused my speed to drop. They are trying different things to help with the d/f.
I accepted the risks was/it is it worth it? For me yes.
Take care, be safe M
My neurologist has had several patients suffering seizure, although nobody else waking up paralysed. He, and his colleagues, no longer prescribe it.
I found it helped my walking speed enormously but it also kept me awake and my sleeping is dreadful without added problems so I stopped it! My walking slowly went back to normal although I did have a spell of it being worse I’m sure that wasn’t because I stopped it but because my MS is progressive so surely that’s not a surprise?
I have now been taking biotin for over a year…unfortunately I had to stop it when I had septicemia so when I started again it I was almost back to square one but my walking has improved tremendously recently as has my bladder. At least biotin is not a nasty drug that will give you awful side effects and price wise I think I’m correct in saying that a years supply of biotin is less than a months supply of frampra. I’m quite shocked at the improvements I’ve had whilst taking it…I started it with no expectations but now I feel I wish everyone with progressive me could take it!
Merry Christmas to everyone,
Nina x