Modafinil

Everyday living
1

Hiya all!

Just been told today by my MS Nurse that Modifinil is no longer being prescribed for people with MS.

Is this just an area code thing again or is this across the board?

Does anyone know please?

Thank you in advance for the replies given,

tc

Anna x

2

I was told this in November - only people who are already on it can have it

Sucks

Karen x

(I’m in London - Hillingdon PCT)

3

Hi Anna,

I was told back in April by neuro, can stay on it if you are already taking it but can’t have a new prescription for it, he didn’t say why they have stopped it.

I take Amantadine, but have tried Modifinil in the past.

Might be worth a try on Amantadine, agrees with some people and works well.

Take care

Kim

4

Thank you, Kim and Karen for the replies.

Karen - I am in the South / East PCT I think.

Kim - Thank you for advice on Amantadine. I am actually already taking this but after going up to 200mg a day for the last 6 weeks, from 100mg. I see no difference at all, unfortunately.

So was looking for something else but after discussion with my MS Nurse today; apparently there isn’t anything else available at the moment.

So gutted at this and thought there was more choice out there for RRMSers.

Someone told me the other day about LDN but it is not something that I can afford at the moment and the forseeable future, until I return to work.

I know that there are worse symptoms to be had so know that I am lucky but I feel like I am sleeping my life away!

tc Anna x

5

I’m sure I read - here or elsewhere - that it was due to some EU ruling. Concerns that modafinil was being misused as a “lifestyle” drug (shift workers, people cramming for exams etc.) so they decided to restrict it to its primary (licensed) use of narcolepsy, completely overlooking that there was a whole other category of people - MSers - using it for bona fide (but off-label) medical reasons. Tina

6

Thanks Tina for your reply.

Is it not possible for the MS Society for ex, to fight for it in the EU?

As surely they can state that it is being used legitamately within the MS groups.

Tc

Anna x

7

Hi,

I started on Modafinil in November - not that it’s made any difference. I’m in Teesside

Sarah x

8

I was offered Modafinil last year for fatigue and turned it down, partly because I don’t like the idea of being on prescription drugs and partly because I felt my fatigue was connected to weight loss. I’d rather try to find a natural, holistic solution, but that’s just me.

Heather

9

My drs. would rather have me awake. The issue may be with new prescriptions in certain areas.