I have just been reading an interesting article about Modafinil and how it helps people with fatigue. I have really bad fatigue and am tempted, but dont like the idea of buying pills off the internet for obvious reasons.
Has anyone tried it and did you like it?
I read the same article. My neuro recommended I try Modafinal for excessive sleepiness a few months ago. I started on Fampyra and that stopped the sleepiness for several months but now it has come back. I’m going to see my GP tomorrow to try and get a prescription. My neuro was very clear about his views. According to him Modanifil is a drug to treat narcolepsy. He will prescribe it to MSers reporting excessive sleepiness, but not just reporting ‘tiredness’. Incidentally, I know one MSer who has been taking it for years because it stopped her excessive sleepiness.
I think that’s one of the things that worried me most about that article. I know it’s more difficult to get it these days but the article made it sound well nigh impossible and some folks might feel as though they have to buy it via the internet (and run the risk of not getting what they are paying for, or worse, something which may cause them harm).
I’ve been on Modafinil for a couple of years now and though it doesn’t help much with my physical fatigue, it wakes my brain up, so I do tend to get more done (if that makes any sense?).
It’s certainly worth discussing with your MS nurse or neuro and giving it a try. Another option is Amantadine, which is also prescribed for MS fatigue. Just bear in mind that they will not necessarily be a magic fix, as the effects are very much down to the individual.
Mags xx
Hi
I have been taking Modafinil for several years now. I originally started on 100mg first thing in the morning. It was then increased to 100mg first thing followed by 100mg at lunchtime. I now take 200mg first thing in the morning and another 200mg at lunchtime. According to my MS nurse, 400mg a day is the maximum dose.
It has to be a decision made by the neurologist whether they will prescribe it or not, a GP cannot make that decision.
I know that I would be unable to function at all without it
Dawn
Hi all,
Does anyone know a reputable website to get Modafinil off plz?
I am constantly complaining to my MS nurse about how the Fatigue is effecting me and has done for a long time now. I am currently doing the best I can with ‘managing’ it with advice from OT. However, it is still a major problem and has a huge impact (negatitve) on my life as it stops me doing many things. even the simplest things 
I have looked up on the net today at a few links but like many others am quite scared of getting something dangerous instead.
Also, how much is Modafinil to buy privately plz?
So very very fed up of fatigue ruining my life and it gets me really down
so anyone suffering from fatigue too, i empathise with you completely x
Hi Anon
Has your MS nurse not suggested any medication for your fatigue? Either Modafinil or Amantadine? I’m assuming you have a neurologist if you have an MS nurse.
I can understand how fed up you must be with fatigue ruining your life, believe me, I know, but it would really be worth pursuing getting Modafinil on prescription from your neurologist.
I would never recommend buying any such medication over the internet, particularly something like Modafinil, and, although I don’t know how much it is exactly, i do know that it is very expensive.
Please keep pestering your MS nurse. You shouldn’t have to suffer.
I wish you all the best
Dawn
When I searched for Modanifil and MS, I found a study from Barts suggesting it STOPS PROGRESSION IN MS. I am not joking - the study is here
http://multiple-sclerosis-research.blogspot.co.uk/2012/07/modafinil-and-progression.html
I’m amazed by this - why aren’t the doctors doing lots of studies on this. The best DMD (Tysabri - also most dangerous) reduces progression by 66%. This study suggests Modanifil stops progression.
I’m off to my GP in one hour to see if I can get a prescription - for my (real) excessive sleepiness. If I didn’t have real excessive sleepiness, I think I might suddenly develope the other kind.
http://multiple-sclerosis-research.blogspot.co.uk/2013/03/modafinil-off-label-for-ms-related.html
Just to clarify it is not a wonder drug and it will not work for everyone.
I agree we should have the choice but more research is needed.
Good luck trying to get a prescription from your GP. I’ll be surprised if you can as my neurologist told me it has to be prescribed by a specialist consultant. Once neuro has prescribed it, it can then be put on repeat by your GP.
I have recently moved and had to change GP surgeries. When I went to my new surgery for my repeat prescriptions, the GP asked me what medication I had as he had not received my notes from old surgery. I went through my list but when it came to the Modafinil, he said he would need proof that I had been prescribed that before he could put it on my repeat list. I had to take one of my empty boxes in with my details printed on it before he would prescribe me.
Let us know how you get on
Dawn
I was on Modafinil few years ago, didn’t have probs getting it prescribed, but I became kinda hyperactive and couldn’t sit still. Got to the point my body was k***kered but brain was still buzzing. Stopped taking straight away!!! I obviously wasn’t fatigued enuf to take them so BEWARE :):)
x Bev
My neurologist suggested that I take Modafinil back in October, when I told him about my excessive sleeping. At that point I was spending 11 hours of some days asleep! He suggested Fampyra for my walking problems at the same time and that drug seemed to stop the sleepiness so I never started on the Modafinil. But now the sleepiness is coming back so I have a reason to go on it. I am a bit nervous - it will be grim if it doesn’t agree with me, now that I know it possibly stops progression.
I saw my GP this morning. He took my blood pressure and pulse - blood pressure 115 over 67, which is the highest I’ve seen it (nervous about getting the wonder drug - my blood pressure is often freakily low). Anyway, blood pressure and pulse both acceptable but now the GP says I have to have an ECG before they will give me the drug. I also have to have another appointment with him because he is wary of prescribing something he’s never prescribed before, even on the advice of my neuro. I will post about what happens.
Good luck with it then Sewingchick. I hope you get the benefits from it. It has certainly been a lifesaver for me. Hope you don’t have to wait too long before GP gives you the go ahead.
Best wishes
Dawn x
How long have you been on it Dawn? And have you had relapses or progression while you’ve been taking it? I’m hoping it’s a miracle cure (I always hope every new thing is the miracle cure!).
Hi Sewingchick.
I can’t remember when I actually started taking Modafinil, but I believe it was around 2005. I was taking Amantadine prior to that but it had no effect at all.
With the Modafinil, I first started off with just 100mg first thing in the morning, and felt the benefits almost immediately. After awhile (again, can’t remember how long ago), I found I was getting through the mornings great but couldn’t function after lunch, so my dose was then upped to 200mg (100mg first thing and then 100mg around midday). Again, this was brilliant for quite a while, up until about a year or so ago when the dose was increased again to 200mg first thing and 200mg at midday.
I must be honest and say that I don’t believe it has stopped progression, but I can’t say that my progression would have happened any quicker or slower over the last 8 years without Modafinil. I do know that I absolutely can’t function at all without it, but I have definitely progressed and quite rapidly over the last year. In fact, I still often have to take to my bed during the afternoon even now I am on 400mg a day, but according to my MS nurse, 400mg is the maximum daily dose allowed, so I just have to live with that.
I did read the blog about Modafinil stopping progression. I honestly can’t say that is true in my case but everyone is different, and I would always recommend trying it. But please don’t get your hopes up for it being a miracle cure.
Best wishes to you
Dawn x
Thank you for posting. I guess I’ll probably have to find a different miracle cure.
I now have the Modafinil in my hands, ready to start it tomorrow. The list of possible side-effects is scarily long and making me a bit nervous. Interestingly, my local Boots had half a month’s supply behind the counter, they didn’t have to order it for me. So presumably, someone else around here is getting it on prescription. My GP had never heard of it before (and has never had a patient with narcolepsy).
Try not to worry. Almost every medicine has an alarming list of possible side-effects. The more effective the drug, the more alarming the list, seems to be one of life’s rules. If you wrote down what the fatigue was doing to you, that would look pretty alarming too, most likely. And that is what modafinil might really help with.
I do not know how I would manage without it, I really don’t.
Good luck for tomorrow.
Alison
Thats great news Sewingchick. I really hope you have good results from it. What dose are you starting off on?
All the very best with it
Dawn x
hi,
does anyone no how much the modafinil is to buy privately plz?
av searched net but cant find definate answer to this. askin as might b only way i wil get it
cheers
I’m a huge fan of modafinil because it helps me massively with mental fatigue, but (and sorry to be a party pooper) this study does not show that modafinil stops progression. Even if it was an otherwise perfect study, the number of people involved would mean that at best it was promising and needed more study, but the details in the abstract showed that it was probably not a great study so I looked for the full paper to be sure. I’ve now read it and it really isn’t a great study
For example, apart from only using a small number of people, they only used medical records to compare EDSS scores from when people had started on modafinil years before, they didn’t control for DMDs, different people were on different doses of modafinil, they didn’t match baseline EDSS between the groups and the range of baseline EDSS were quite ridiculous (the “no modafinil” group had a range of 0-7.5!), they only used EDSS to measure disability (and it’s not a great measure) and they didn’t try to establish whether or not the EDSS reflected an active relapse (which is highly likely when you have at least one RRMS patient with an EDSS of 8.5).
Sorry, but it’s pants
Apart from anything, my EDSS was 1/1.5 when I started on modafinil and it’s now 6. Sample of one, but pretty conclusive versus “stops progression”
I really hope it works for you as well as me though: I couldn’t cope without it.
Karen x