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UPDATE on Fatigue

Hi all,

I thought I’d give an update on a thread I started recently (sort of). It’s this one -

So, I had an appointment with my MS Nurse and we discussed the feeling tired constantly.

I really came prepared because all of your responses to that thread. I asked her about Modafinil and she explained that GP’s are usually reluctant to prescribe it. I don’t really understand why this is. She said the hospital could do it for three months and then pass it on to the GP to carry on prescribing.

She then talked about Amantadine (I played dumb here even though I was aware of it, again, thanks to you guys). She said that I should try that one first; the GP would be more likely to prescribe it. She did say if it didn’t work, I could move onto Modafinil.

So, I agreed to try the Amantadine. She will be sending a letter to my GP asking her to prescribe the Amantadine. Fingers and toes crossed she agrees. I do hope it works but I’m also glad that Modafinil may be an option incase it doesn’t.

Sadly, my MS Nurse will be leaving soon but I really hope that whoever, if anyone replaces her, they will continue where she left off.

Anyway, I’m really glad this forum exists and that something is being done!

Thanks for reading about my sleepy woes,

Nora :slight_smile:

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This statement from NICE is supposed to explain why doctors can get jumpy when asked to prescribe modafilil for MS fatigue.

https://www.nice.org.uk/guidance/esuom9/resources/modafinil-for-fatigue-in-multiple-sclerosis-17669514949

I am lucky in that I started taking it years before some edict from Europe started making things difficult, and I hope to continue for as long as it continues to work for me. In other words it seems that, once you have cast the right spell to unlock the enchanted door to getting it prescribed in the first place, you’ll be OK. Daft business. It’s a bit like one of those computer quest games that children play, isn’t it? Which is a bore for those of us who are a bit old for game-playing and just want something fuss-free that works to relieve MS fatigue!

Alison

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Officially diagnosed in 2013. RR - just undergoing a minor (so far!) relapse.

Have been using modafinil for 2 years now. It has been tremendous for my fatigue and helps me get through mundane tasks and helps focus the brain. I own a business and so, with it, goes the expectation to ‘lead from the front’.

I take 100gm (1/2 a tab) once a day - in the morning. A beginner to it may find they can get away with less. Some folks may find that the full 200gm tablet is more effective. Dont take it any later than noon or you may not get a proper sleep!

I also try to miss a day or two, so that my body doesnt become reliant on it. (2 days on - 2 days off ?)

Has anyone explored the long term usage issue? It looks like I may need this drug for the forseeable future.

… please dont ask where I get it, (it is definitely not from my specialist) or how much it costs - or I will have the do gooders with little understanding of what we’re going through hammering on my door.

Take care!