Taking Riluzole

[Doug Carpenter]

I was prescribed Riluzole when I was diagnosed 19 months ago. Blood tests seem OK and there are no other obvious side effects.

Wine - drinking it, teaching about it - remains a major hobby that I continue with. A modest amount of alcohol seems to have a relaxing effect, not surprisingly!

Doug

[Ellie]

Lynne, I'd say at least 90% of us on Riluzole, who can drink safely, consume caffeine, be it in tea, coffee, cola or other sources, and have done so since Riluzole came onto the market.


I take a pragmatic view of living with my ALS/MND - you know what, it's my weak respiratory muscles which will kill me, not the chance that an indeterminate amount of caffeine may delay elimination of Riluzole from my body.

Day-to-day life with an MND is difficult enough, so I, for one, won't be giving up my daily mug of fresh coffee !! (which is a good laxative)

Love Ellie.

[Lynne K]

Thanks Ellie and everyone else for their comments. I don't like coffee so that isn't my problem. I have a couple of mugs of tea per day. Would you think the smaller amount of caffeine in that be a problem? Thanks. Lynne

[nunhead_man]

Hi John

Always take half hour before breakfast

Interesting - I've got used to waiting an hour after I take Riluzole before I eat anything, and waiting two hours after I eat anything before I take it, per the guidance

Warmly

Andy

[nunhead_man]

Good morning,

The European Medicines Agency product information states that caffeine could potentially decrease the elimination rate of Riluzole

Yes that's what I thought - so am I barmy to assume that that is good in terms of reducing the stuff that causes motor neurone disease providing it doesn't screw up my liver?

Best of all

Andy

[JAY TEE]

Taking Riluzole. Been on now coming up 5yrs. Always take half hour before breakfast always weetabix mashed fruit yoghurt and second tablet at 5pm usually hour before tea. Had blood test after first six months then yearly. Best wishes John

[Terry]

Thanks Andy and Jacqui;

I would not worry too much about things as many of us have been drinking alcohol, coffee, coke, etc a lot of the time, not too excess though.

But having said that it's always nice to know what is best so that we can strive towards that.

It is good clear information that says a lot of the things that we have been saying.

Love Terry

[MNDConnect]

The European Medicines Agency product information states that caffeine could potentially decrease the elimination rate of Riluzole.
We would suggest that if you are concerned that you speak to your GP, Consultant or Pharmacist.
I have spoken to our care information team about including this information on the Riluzole information sheet
We will be looking to gather further information about the effects of caffeine and Riluzole elimination and will update you with any findings.

With kind regards

Jacqui
Senior MND Connect Adviser

[nunhead_man]

I'm coming back to this is curiosity got the better me this morning and I googled "coffee and riluzole" as I had a cup of coffee without thinking within the hour after I took my tablet this morning.

Found a reference and says that caffeine causes retention of riluzole in the system and may result in overdose?

E.g.https://www.rxwiki.com/riluzole

[Doug Carpenter]

Yes - half an hour before or two hours after food, which would otherwise decrease the absorption.

This was discussed a while back and I posted the advice given to me by the care coordinator at my MND clinic.

But it doesn't just apply to Riluzole. Apparently all medications - except NSAIDs, e.g Ibuprofen, which should be taken WITH food - would benefit from this regime.

Doug

[Ellie]

Hi Lynne,

For every prescription med, there is a Patient Information Leaflet (PIL) which should be enclosed in every dispensed medicine, and a Summary of Product Characteristics (SmPC) which is a document required by the EC before a Marketing Authorisation is granted and has more detailed info than the PIL.

This is from the SmPC for Riluzole: The rate and extent of absorption is reduced when riluzole is administered with high-fat meals (decrease in Cmax of 44%, decrease in AUC of 17%)

All PILs and SmPCs are available online.

Hope this helps.

Love Ellie.

[JAY TEE]

Nun head others, the drug taking about right hour before two after. The blood test I took blood test twice for first two years and after annually. Been on them now for four years next test January. Best wishes John

[Terry]

Hi Lynne;

one hour before/one hour after food rule was for those people taking Riluzone that feel sick

I'm not really the right person to talk about medication but I can't see that taking riluzole on a empty stomach would improve the feeling of sickness. I would have thought that taking them with food would have reduced any sickness feeling as they would be diluted. I believe that the reason for taking some drugs on a empty stomach (1 hr before or 2 hr after) is to make them more effective.

Ellie might be able to point you in the right direction for the technical stuff.

It might be good for the Mnda to get some professional advice regarding these points.

Love Terry

Love Terry

[Lynne K]

I was under the impression that the one hour before/one hour after food rule was for those people taking Riluzone that feel sick because of it. I don't and can take it either with or without food. Where would I find the information mentioned about fat inhibiting the uptake of the effective ingredients of Riluzone. As you all say we ought to be given full information.

[MNDConnect]

Whist updating the information sheet it should also be mentioned that some brands of Riluzole have a poorer coating on that can cause nausea and numbing of the mouth and throat. Glentec brand is particularly bad for this and is quite often the first prescribed

Thank you for this Terry, I will pass this information onto the team Terry for them to look into adding to the information sheet.

When it comes to medication we would always advise following the recommendation of the pharmacist/GP, often they would include advice over how to take this on the prescription label. If someone is unsure the pharmacist or the GP would be able to provide further clarification.

Blood tests usually happen monthly for the first 3 months and then quarterly for the remainder of the year. After this point it should then be monitored by the GP and the frequency will be agreed by them.

Best Wishes,
Adele