hiya all,
i spoke to my ms nurse other day bout me wanting Modafinil to try as Fatigue is sucking life out of me etc etc - know u guys will understand here.However, she told me that the EU ppl have banned it for use with MS ppl now as it was considered dangerous and this is why ppl aren’t being prescribed it no more.
but does anyone actually know what the issue and what exactly is the danger bout it plz?
as she didnt go into many details see.thnx in advance guys
god bless Anna x
Sorry, but I think your nurse is wrong. I don’t believe it is considered “dangerous”. Several here are still on it, and have been for years. If it was a safety issue, I’m sure it would have been withdrawn immediately for everyone, and not just “new users”.
I think the reasoning (if you can call it that) behind the ban was it’s only officially approved for narcolepsy. Too may people were abusing it as a “lifestyle” drug (shiftworkers, students cramming for exams etc) So to address the escalating use amongst people who weren’t ill, the EU said it should only be prescribed for its original purpose - narcolepsy. Completely overlooking people with other genuine health conditions, who might have benefited. As far as I’m concerned, it’s a bureaucracy reason, not a safety reason.
Tina
x
thnx for ur reply Tina,
is there someone that i could raise this issue with then plz?
i take it that no would be the answer to this question as im sure all msers would be fighting the issue. my nurse told me that even ppl who are being prescribed it are being stopped n are being moved onto the crappy (imo) amantadine.my nurse also told me that apparently Modafinil isnt good in trial results for ppl with MS. but i told her about here and i read pretty much everyday on here how ppl on it r raving about it.so where she gettin her info from i dont no as aren’t the ppl on here the patients/ msers that really know what helps n doesnt etc…
just so disappopinted in it all now 
xx
I’m sure there must already have been protests about it, at some level, but I don’t know the correct route, and taking on the EU is not something I have the energy or inclination to get into, sorry. Maybe someone else will know if there’s a petition or something?
I think your nurse is probably correct that the “available data” does not strongly demonstrate effectiveness in PwMS. But as it’s a narcolepsy drug, I’m not sure there have been many large scale studies. There are definitely people here who swear by it, and I too would like the opportunity to try, as I’m spending nearly half of every day asleep. Half the supposed waking hours, that is, not the half we’re meant to be asleep!
I wouldn’t be able to have amantadine anyway, as I’m currently on quinine, which is incompatible. I’ve been pleased with the quinine so far, and wouldn’t like to stop, so no amantadine for me, and not much chance of modafinil.
Tina
x
Hi Anna
Not sure if my reply will be published, as I have done several replies to threads regarding Modafinil and they’ve always been queued for approval by mods but then never published!! so here goes anyway.
I have been on Modafinil since 2005. I now take the maximum dose of 400mg a day, and I know that I wouldn’t be able to function at all without it. As it is, I still have to take to my bed practically every afternoon for 2-3 hours, but I know, by the occasional time that I have not taken it, that I would have no life at all (if you can call it a life, lol) if it were to be withdrawn from me.
Prior to being prescribed Modafinil, I was on Amantadine, but it had no effect whatsoever.
I have recently had to change GP surgeries and my new GP was surprised that I was on Modafinil, and was unwilling to add it to my repeat prescriptions list, unless he had proof that I had been prescribed it from my neurologist!! Luckily I managed to get the proof and he reluctantly added it to my repeats, but I felt he was quite disapproving of it!
I hope you can find some answers as to why its now not approved for MS fatigue. My guess would be that its all down to cost, as I now it is a very expensive drug.
Best wishes
Dawn x
Hi Anna,
I attended a Local MS Soc. Information Event near me, a few Saturdays ago and one of the discussions was about Fatigue Management. The MS Nurse leading the talk said that Amantadine was the currently prescribed drug for this.
We were invited to ask questions at the end so I asked, “What about Modafinil?” - knowing that so many take it. The reply was that Neuros no longer sanction it because of potentially harmful side effects which had been reported. He went on to say that some may be lucky in that the GP will continue to prescribe, as long as the GP ( not MS Team) takes responsibility for it. Not much help, I’m afraid but thought I’d mention it.
Eiona
This is not my experience at all. My neuro (specialist in MS, at the National Hospital for Neurology and Neurosurgery) suggested I try Modafinil last October, when I told him about the excessive sleepiness I was experiencing. He checked first that it was sleepiness, rather than just tiredness. A good neuro will prescribe this drug if you have the problem it has been shown to solve, which is excessive sleepiness caused by MS. Your MS nurse is not correct if she is saying something different.