Riluzole

[Sueb]

Is anyone having trouble getting any brand of riluzole other than Glentek. Have been trying for a week. We are on second chemist who are trying for a second time with a different supplier. First chemist tried three times but the suppliers kept sending Glenteck. Steve had been having trouble with that brand with numbness and tingling in the mouth. We had been able to get other brands for the last few months. Keep being told they are in short supply. Hopefully will get some on Tuesday. Also apparently Glentek are the cheapest!

Sue

[shrew]

Mick's say Ascend on the box?

[Terry]

Hi Sue;

Not so far, I always ask for Riluzole Teva 56 x 50mg (NOT GLENTECH BRAND prefers teva or actavis) because of that reason. Riluzole are OK as well I think.

I can only say to take them in a little yogurt and keep trying for another brand as Glentech's coating melts so quick.

Love Terry

[Sueb]

Terry will see what we get on Tuesday but if can only get the Glentek will try the yoghurt.


Sue

[Guest]

Hi Sue, the wife is unable to swallow so has the oral solution, has teglutik on the box, not sure if you can get this in any other form though. Hope this helps on your search for an alternative
Tim and Mary

[Terry]

Hi Tim;

I think that Teglutik still has the license and therefore the only one that can sell liquid Riluzole.

They sell it somewhere over £120 for 4 weeks supply compared with around £11 for the tablets.

That's why Doctors don't want to prescribe it unless needed.

Love Terry

[Guest]

Thanks Terry, as the wife can't swallow I guess they had no choice other than to go for the more expensive option,.
Tim and Mary

[Sueb]

Managed to get a different brand yesterday, but it’s taken over a week to get it. If same happens next month will try try the yoghurt with Glenteck.

It’s all down to costs, Boots try to avoid getting the more expensive brands in, and apparently Glenteck is the cheapest.

Sue

[Terry]

Sue;

I think that the other two brands are the same price unless they get a offer on Glenteck. I think Riluteck brand is a few pounds more.

Love Terry

[Doug Carpenter]

My latest batch, supplied by Pharmacy2U, is film coated Riluzole made by SUN Pharma. The previous lot was Glentek.

Doug

[Kayleigh]

Sun Pharma gets a thumbs up from me! I find their tablets have a much better coating than Glentek tablets. It's a race against time (usually max. 2 seconds) for me to swallow a Glentek tablet, before it starts to dissolve and I am hit with that rather revolting 'Riluzole flavoured' tang on my tongue.

Not the best invention in the World - a tablet with a coating that makes it difficult to swallow, for patients whose symptoms often include difficulties with swallowing.

Glentek might get first prize from the NHS, for cost effectiveness... but definitely no prize from me, for ease of swallowingness!

[Doug Carpenter]

Swallowingness - lovely word Kayleigh!

Seriously though, I hadn't appreciated the significance of the different speeds of dissolution. I can still swallow fairly well and all that happens sometimes is pins and needles on my lips.

I've had various makes over the years and hadn't paid much attention.

Doug

[Terry]

Hi Doug;

I think that over half of the side effects from Riluzole happen because it starts to dissolve in the mouth /throat area.

Love Terry

[Kayleigh]

Hopefully, the liquid version of Riluzole has got a pleasant flavour!

I suppose that the price of the tablets varies according to the quality of the coating. A bit like nurofen being more expensive than cheaper brands of ibuprofen, that don't always have such a good quality coating.

Doug:- ' swallowingness ', just a random word that happened to pop into my head - I don't think it would get any points in Scrabble or on Countdown though!

Kayleigh x

[Sueb]

Steve has got Sun Pharma this time. They are much better.

When we had them from before from boots they said that cost over £200 a months supply compared to £14 for Glentek.

You can see why they want us to have Glentek but they just dissolve to quickly before you can swallow them. Steve didn’t have a problem with them in the early days has he didn’t have a problem with his swallow, but things change.

Sue