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Modafinil - BBC Report

Modafinil is often discussed on this forum as a treatment for fatigue, something most of us suffer from. The BBC News Magazine have this week reported on the drug, its uses and side-effects. MS is not mentioned.

It’s an interesting report… but I don’t think I’ll try it…

Ben

This seems to be the reason why people who genuinely could benefit from Modafinil can’t get it any more. I took it for several years, apart from feeling a little ‘edgy’ and nauseous in the first few weeks, I had no untoward side effects. There seems to be a fashion for students taking it to get through all night study sessions and party animals wanting to dance all night using the drug.

Currently I’m trying to get it re-prescribed due to cognitive problems, and having had it before I have no doubts about its safety and / or side effects - for me. Other people might experience unwanted effects but as for hallucinations, and other such effects, I think you’d have to be on a pretty high dosage or be in an unlucky minority, which is possible on any drug.

I think it’s a very useful drug, for narcolepsy (which is what its licensed for) and for MS related fatigue, including perhaps cognitive problems. In my opinion it works better than Amantadine - which is the only other drug offered to pwms for fatigue.

Sue

Hi Ben,

I discussed Modafinil with my Nero and he was explaining to me why they don’t prescribe it at the National Hospital in London anymore, actually for over 20 years its because one of there patients there got what they call -Stevens-Johnson syndrome which is a life threatening skin condition caused by (Toxic epidermal necrolysis) which was they say one of the side effects of Modafinil he said it was only a small percentage of people who would get it but it was not worth the risk.

Ive heard of people on here who say its a great help so I guess its not all the experts who are so concerned.

Don’t think I will try it either.

Kielyn

The nastier the problem that you want a drug to solve, the more risk you are prepared to accept, generally speaking. Only close-to-zero risk is going to be OK for a perfectly healthy student wanting to give himself an edge with modafinil. Those of us with MS fatigue are another matter. This one is, anyway.

Alison

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Hi Sue, I’m glad you found the drug useful and didn’t suffer from the side effects, however, it does seem to be controversial. I’m sure there will be more discussion.

Ben

Alison I think the point you make is one that is just simple ignored by the medical system. All treatments carry some risk and are to a certain extent experimental since we are all different and react differently to drugs wether we are looking a drugs licenced for MS or off label things like modifinil. My wife has done well on LDN but that also is not successful for everyone.

The PR with the NHS is - your NHS your choice. However in many cases the reality is more like Henry Fords original statement ‘You can have any colour you want providing it is black’

There is so far as I am aware no perfectly safe and effective treatments for MS. Till there is then I think patients should be given much more choice of treatments, however if you make a choice that the system is not happy to underwrite then you should quite rightly take responsibility for it with no right to sue the prescribing doctor if things go wrong

Quite so: there aren’t any perfectly safe and effective treatments for anything.

I do not agree that the NHS is blind to sensible variation in tolerability of risk profiles for different medication in different circumstances, though. For instance, natalizumab, (which I have been taking for years) comes with significant risks and only has a licence because it is highly effective, and people with highly active RRMS are going to be in big trouble if their disease goes unchecked, so that risk is going to be worth taking in some circumstances.

If natalizumab turned out to be a terrific cure for the common cold, however, there is no way it would get a licence for that - no one in their right mind would take the risk for such a trivial benefit. And no responsible doctor would permit a person to take that risk while under his/her charge - stopping people taking stupid risks is part of what doctors are for. So I do not agree with you that doctors should give their blessing to people making stupid decisions that the doctors think are far more likely to cause them harm than good.

Alison

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I guess that all depends on who defines the definition of stupid. However currently patient choices often depend on which doctor they have and which PCT they receive care from

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When one is under the doctor’s professional care, it is his or her call at the end of the day. Although there is no law against going one’s own way, of course.

True, alas. Although if one-size-fits-all rigidity were to be imposed at national level, there would be just as many complaints about that as there are now about individual doctors’ whims and post-code lotteries! I don’t suppose there is a perfect way of arranging these things in our postlapsarian world - muddling along and tweaking for the better here and there is probably the best we can manage.

Alison

I was taking Modafinil a few years ago but it stopped having an effect after a while so I stopped. I was taking it every ay which, I think may have caused it to become ineffective.

I started up with it again a couple of months ago and the label says to take one, three times a week. Although I work Monday to Friday, I work from home Tuesdays & Wednesdays so I only take one when I’m going into the office and it all seems to be working well and I don’t appear to be suffering from any side effects. I think limited use might be the key in that respect.

As for side effects in general, if we paid close attention to what’s on that piece of paper inside the packaging of our medicines, we’d never take another tablet.

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I tried Modafinil a few years back and used it on and off for a couple of years. The 1st few times I used it, it was an absolute godsend and allowed me to carry on working. But when I then tried it a couple of years back, I had to stop it as it gave me horrible side effects. Was really gutted as it was a wonder drug for me but I guess my body had other ideas.

I agree with the discussion about risk taking and the worry about all possible side effects and weighing up your options. I took 2 extremely serious relapses last year and have now been given the choice of 3 new meds I can have ‘Tysabri’, ‘Gilenya’ or ‘Lemtrada’. They all come with their own risks but after being so ill and experiencing the worst relapses Ive ever had - I got a glimpse of what the future could hold and it wasnt nice. So I have to now choose a very serious drug, with potentially very serious side effects, to prevent a very serious illness from getting seriously worse…go figure lol!!

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