hi guys, i currently take amantadine for my fatigue, anyone used Modafanil (Porvigil)?
Anyone had any problems with Modafanil (Porvigil)?
Any idea how to get hold of this, the MS nurse said the NHS no longer give it out due to a risk of cardiac side effects.
cheers
Hi
I guess that means the Amantadine isn’t helping as much as you’d like then? I’m on Modafinil and, although it’s not suddenly ‘cured’ fatigue, I do think it’s great. There’s days where it doesn’t seem to do anything, but that’s usually because of other factors, like the recent hot weather. But generally I don’t get so tired at work.
On the downside, it’s raised my blood pressure a lot and I’ve had to start taking pills to try & reduce it. If it doesn’t come back down then my neuro said she’ll stop prescribing it. I’ll be very sorry if that happens.
As your MS nurse has said, it’s generally not widely available. I’m fortunate here as my neuro fought hard to be able to prescribe it, so I think you’d need a neuro who’s willing to do it. It sounds like you’ll struggle where you are, but you should ask anyway.
Good luck
Dan
Hi There,
Im on Amantadine 100mg morning , 100mg lunchtime, I find it does help a bit , if I don’t take it I would feel more tired in the afternoon.
I wanted to take Modafanil but my Neuro they said under no circumstances will they prescribed it. said there was a danger of getting( Stephen Johnson Syndrome ) which when I goggled SJS it looked pretty awful. I think the odds of getting it were small but they would never Prescribe it.
I have known a few people on here who take it and find it great. But the National Hospital in Queens Square , London they refuse.Just my luck. So I stay on Amantadine been on it for since 2005 have no side effects. Sowill carry on with it ,I find if I pace my day out one step at time I can basically control my Fatigue.
Good luck
Kielyn
biotine and thiamine 300g each per day
I find that modafinil definitely helps me and I have been taking it for years. What a pity that it is so hard now for new patients to try it. Goodness knows, we are not spoiled for choice of things to help with MS fatigue, which can be so debilitating!
Alison
The doctor has just rang me and he is willing to give it a try. Do you think I should come off the Amantadine too? Did you get any side effects to the drug?
Glad to hear your doctor’s willing to give it a go. I’d be very surprised if it would be OK to take it alongside Amantadine, but then, why would you want to carry on with Amantadine? If it’s not working then there’s no need to carry on; if it is, then why take Modafinil? But ultimately, that would be down to the doctor/pharmacist. Before starting though you should have an ECG to check your heart.
Dan
Joyj
What do biotin and thiamine do?
I’ve had both Amantadine and Modafinil. At first Amantadine worked but when it stopped doing any good I was swapped to Modafinil. At that time there was no question re cardiac effects. It was prescribed off label as it was licensed for narcolepsy rather than MS. For the first 2/3 weeks I was feeling very nauseous on it and a bit sort of speeded up if you know what I mean: slightly edgy and gnashing my teeth a little! But these side effects soon wore off and I took it for a good 5 or 6 years with no problems at all. Eventually, like many drugs, it lost efficacy. I discovered this when I stupidly forgot to take it away on holiday (don’t know how, it was one of about 5 drugs I took regularly and I remembered all the rest!) I found that it made no difference to fatigue levels with or without the drug. So I just stopped taking it.
I would definitely recommend Modafinil over Amantadine. It worked very well, and was a lifesaver when I was employed and driving all over the country for work and couldn’t afford to be feeling severe fatigue. At least now I don’t/can’t work I can easily go for an afternoon nap.
Sue
That’s great news. I hope that you get a good effect with it.
One thing - modafinil can interfere with the action of at least some sorts of contraceptive pill. If this is a potential issue for you, you might need to make some changes in that department - best discuss it with the GP if the subject has not yet come up. Otherwise I have not been aware of any unwanted sides as long as I take modafinil in the morning - later and it can interfere with sleep a little. It is, for me, a very helpful drug.
Alison
been taking the biotin and thiamine 19days, im high energy and really happy best for at least 5 years