Rilutek/Riluzole availability in UK

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Ghost Dancer

New member
Joined
Jan 6, 2009
Messages
5
Reason
PALS
Diagnosis
12/2008
Country
UK
State
Scotland
City
Aberdeen
Just wondering if anyone else if having trouble getting their rilutek prescription filled in the UK?

It often takes my local pharmacy a week or so it get it, but this time I'm told there is a manufacturing problem and that none of their wholesalers have any. Anybody having trouble?

Thanks

Mike
 
Do you really think it is worth taking? I guess you are getting it cheap on National Heath but where I am it's costing me over GBP500 for 56 tablets...4 weeks worth...and you'll never know if it really benefits as we all progress at different rates anyway. If I continue with it I think I'll get it from Canada where it's about half that price.
 
I just got my forth months supply posted straight out to me and nothing was mentioned about a lack of them. I have Decembers batch still at the pharmacy ready to send out at end of November.
 
My question does it work,I look at the side effects and it scares me,have talked with one person on line whos wife tried it and she had effects that were not good,she stopped taking it.I have the insurance coverage,but will tell the DR,no way
 
Hi beach bum
Love the name! We cannot get it here in NZ as we have national health. It has very limited benefits, in fact I have been told by a reliable source that it is expensive and only increases life expectancy by 2 months. Because of the poor effect, it is not subsidized here. I have not looked at the clinical trial data myself as it does nothing for PLS, so you could look at it yourself on the Internet.

Aly
 
Read the threads at the bottom of this page before making your decision. Personally, if you can afford it I'd take it. The side effects don't bother all people.

AL.
 
The only side affects I seem to have is tiredness, other than that they are fine so I will continue to take them for as long as there available. If they did cost as much as in some other countries I would struggle to pay for them.
 
That's because you bare in the uk. That's what Obama care will bring us here soon
 
I've not noticed any side effects. Why would you think the pills are making you tired when you are going to tire easily anyway because of weakness?
 
Chris - you're lucky that your pharmacy will hand out so much at once, mine will only dole out 1 months supply at a time, which leaves me at risk of hiccups in the supply chain.

Does it do any good? Who knows, sadly it is all we've got. The proven benefit is a few months right at the end of life, the unpleasant, messy ones, as my consultant referred to them. She, reasonably, asks the question if these are the type of months I'd want more of. As I am lucky enough to be prescribed it free through the national health service, and haven't experienced side-effects, I'm going keep taking it for now, more in faith than expectation.
 
I know the illness causes tiredness but it seems when I take my first tablet at 10am, within no time at all I feel like every ounce of energy has gone and as a result I end up having an afternoon nap! I could be wrong, but that's what it seems like to me.
 
"Anyone with MND who has difficulty obtaining Rilutek can ask their pharmacist to contact Sanofi Aventis, who have instituted a Direct Pharmacy Emergency Delivery system. Pharmacists should call 0800 854430 to arrange for a supply to be couriered direct to them."

There has been some discussion about this on Build UK forum, as well as guidance by MNDA. We had trouble in the past, but the above worked.

Dani
 
Hi I only took it for 3 weeks and i was extremly tired while on it . when I stopped I was okay
take care
Scouse
 
Hello, everyone. My cousin in Russia just has been diagnosed with ALS.
He has got prescription from his doctor for Rilutek but Russia doesn't buy it, so we are looking for the ways to help him. I suppose one can buy it anyway in Russia on black market for big money, but he feels that he can't afford it, and we are also afraid of being cheated, as fake medicines is a very common thing in Russia. I'm posting here to get advice how to obtain Riluzole (Rilutek) in UK or any other country or maybe someone has leftovers or the medicine was not good for u and u want to sell it (no matter how much is left). I will buy it, please send me a message ASAP as I want to help my cousin. Thank you.
 
... I have not looked at the clinical trial data myself as it does nothing for PLS, so you could look at it yourself on the Internet.

Aly
Aly, why do you say it does nothing for PLS? Was it ever trialed for that? I looked at the Irish retrospective ALS study a few years ago and was reasonably convinced that over a longer time frame than the original trial, is does add more than 2-3 months.

Also, on someone's comment above that its only benefits are conferring a few extra months "at the end of your life". Well, how it could it add it anywhere else?
 
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