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Finally... Modafinil

I have been reading about Modafinil as I have really REALLY bad fatigue. I have already tried Amantadine and it didn’t really work. I’m sure everyone can sympathise about trying to go to work day after day when you feel like sh*te!

Months ago I asked my doctor if she would consider prescribing Modafinil for me. I got a resounding NO! Apparently it is not licensed for MS - just for Narcolepsy I think. SO…I tried my MS nurse who wrote to my GP telling her that Modafinil has shown very good results for MS fatigue and she would back me having it.

Went back to my GP…she started the process on the computer but then the computer said NO!. There followed some to-ing and fro-ing. Correspondence with Neurologists etc etc etc but nothing could be done.

SO…I booked an appointment with a private neurology consultant. We discussed everything in depth. He couldn’t understand why a helpful (and not too expensive drug) would be prohibited in this way. I do understand from reading into it a little that people were abusing the drug to help them stay alert when they were studying/working etc etc.

Private consultant conferred with consultants at the hospital where i’m seen and to cut an already long story a bit shorter…I have finally got a private prescription for Modafinil.

I have an appointment at the hospital in a couple of weeks, and I did need to have an ECG to check my ticker was working properly. But if all is well - and if it works - the hospital can liaise with my GP and put a system in place whereas the GP can prescribe in the future.

I’m picking it up from the pharmacy this evening and I am SO excited to see if it works.

Watch this space…if it works I might get really annoying and buzzy (I hope)

Well done for persevering. I had Modafinil for a few years until it eventually stopped being so effective. (I only discovered this when I went on holiday and had forgotten to take it with me - I had all my other drugs just not that one, so I eked out what I had left in my handbag and found there was no difference!) When I first started taking it, I remember having tooth grinding, slight edginess and nausea. I asked the neurologist if I should stop, but he said to keep going, all the side effects would disappear, and they did. Within a month. And it worked very well. Just make sure you take it early enough in the day, I was advised to always take it before 4pm. In fact, I always took it a lot earlier and didn’t have any trouble sleeping. It should be a brilliant drug, it will sharpen your brain a bit as well as reduce fatigue. That’s obviously why it’s been abused. But it is a great drug. Sue

Good for you. I am sorry it has been such a performance, getting hold of it through the proper channels, but I am sure that is the best way to go: you know what you’re getting, unlike someone buying goodness knows what old rubbish on the web without a prescription.

I have been taking modafinil (also prescribed) for years and have found it a great drug. I hope it suits you too.

Alison

My consultant prescribed it on my initial diagnosis just because I said I had been feeling tired. I haven’t actually taken up the prescription as, after reading up about it, I decided I didn’t need it.

i wanted to try LDN and there is no way a gp can prescribe it.

my lovely gp was all for it but he told me it wouldn’t be allowed.

i got a private doctor to prescribe it and after a few months my gp said he’d take over the prescribing.

there are so many restrictions on what we can have and there doesn’t seem to be much logic to it.

So - Day six of taking Modafinil and i LOVE it. Takes about an hour and a half to two hours for me to fully feel the effect but when I do the brain fog clears and I feel like me again. I can enjoy my days off instead of plodding from one ‘task’ to another and feeling rubbish. At work I can function like a real live human being again (some would disagree ) instead of wading through a sea of MS treacle and putting my head down every few minutes to try and get some relief from the fatigue.

I believe that my doctor is willing to start prescribing it once some paperwork is put in place between her and the neurologists at Salford, but as I said above - I would be more than willing to pay for it rather than struggle on the way I was doing previously. I totally understand NICE prohibiting its use in some cases - there were people who were abusing it to be able to work longer and/or better. However - the people who would do that are still buying it off the internet and the restrictions mean that for people like me - who would benefit enormously from using it are more often than not denied the chance to try it. It’s not an expensive drug so I can’t see that being the problem.

Come on NICE - health is not a one size fits all thing - perhaps it would be wiser to look at each case individually. In my case i’m very hopeful now that using Modafinil will mean I don’t have to take long periods of time off work due to this crushing fatigue and as I work for the NHS that’s got to be a good thing!

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That’s great news. I’m glad it is doing the trick for you.

Alison

Now almost four weeks since I started taking Modafinil. I feel SOOOOOO bloomin good. My days are filled with normal things. I’m loving my job again - and I feel like i’m doing it well too which is a bonus - could never be sure when I was all fogged up. Had an appointment with a consultant neuropsychiatrist on Thursday who took a good long time talking about my history etc. etc. etc. To cut a long story short she has prescribed three months of Modafinil for me and when I need more I just need to ring her secretary to get another prescription. Only teeny tiny bugbear is that I have to go to Salford Royal to pick it up every three months. I reckon I can live with that. As a side note - she found a heart murmur and i’ll have to go for an echocardiograph - but it’s nothing to worry about, she just wants to know why. Life looks good again.

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That’s utterly brilliant. I know what you mean from when I took it first. It’s a great drug and so unfair that more people are denied its benefits.

Sue

Just what I needed to read today, with 5 days left to work before Christmas I was struggling with the idea that there was nothing other than exceptence re my fatigue. I really hope it works for you and all turns out to be ok with your heart.

Sarah

If you can’t get a prescription for Modafinil, you should be able to get one for Amantadine. Modafinil is strictly speaking only licensed for narcolepsy (constant falling asleep) but for several years neurologists were able to prescribe it ‘off label’ for fatigue in MS. But there were two problems, the first is that there seemed to be a bit of a problem with people taking it either recreationally or as a study aid (it helped with concentration). The second is something to do with people taking it and having cardiac trouble. So most neuros stopped prescribing it.

Amantadine on the other hand, isn’t as good as Modafinil for fatigue, but it does help a lot of people and you’ll definitely be able to get a prescription for it. You could ask your MS nurse to contact your GP and request that they give you a prescription for Amantadine. You never know, that might be all it takes, otherwise, phone your neurologists secretary and ask her how you can go about getting a prescription. (Unless of course, you have an upcoming neuro appointment and can ask for Modafinil and failing that, Amantadine.)

Have a look at the Treatments part of https://www.mstrust.org.uk/a-z/fatigue

Sue

Good afternoon everyone, my daughter has been using Modafinil very successfully for 14 years and now having moved house has had to move GP’s and they are not willing because of the NICE directive to prescribe it anymore for her. She attends the MS clinic at Addenbrokes and they cannot prescribe it either, we live in Essex does anyone know of any consultants or doctors who are still willing to prescibe it, I would even be willing to pay for a private prescription if that was the only way we could get it for her , it has been her lifeline. She has tried Amantadine and that was no help at all. Thank you

I am so sorry to hear this. As I understand it, GPs will usually need consultant support to prescribe modafinil; it is very disappointing that your daughter’s new consultant is not prepared to provide this, even though she has been taking it with good results for years. Sometimes patient choice does not seem to count for much, I’m afraid, and neither does kind common sense. :frowning:

Alison.

Thank you for your kind thoughts, I am still hoping that somehow we may find a way round this as it seems so cruel to take away something that is really helping. R

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