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Sueb
19th January 2019, 20:57
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
19th January 2019, 21:15
Mick's say Ascend on the box?

Terry
19th January 2019, 21:41
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
19th January 2019, 22:32
Terry will see what we get on Tuesday but if can only get the Glentek will try the yoghurt.


Sue

Tim-griffiths
22nd January 2019, 19:01
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
22nd January 2019, 21:09
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

Tim-griffiths
22nd January 2019, 21:12
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
23rd January 2019, 09:03
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
23rd January 2019, 11:57
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
23rd January 2019, 22:38
My latest batch, supplied by Pharmacy2U, is film coated Riluzole made by SUN Pharma. The previous lot was Glentek.

Doug

Kayleigh
23rd January 2019, 23:54
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
24th January 2019, 09:51
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
24th January 2019, 13:00
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
24th January 2019, 13:30
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
24th January 2019, 20:29
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

Kayleigh
25th January 2019, 01:01
Hello Terry,
Did you used to have the Sun Pharma tablets? (I thought I remember you posting about them last year, on another thread, but I could be wrong).
Kayleigh x

Terry
25th January 2019, 12:25
Hi Kayleigh;

August last year, I was given a different kind of Riluzole, made by Sun Pharma MA Holder Netherlands.

Also, Oral suspension of riluzole approved by FDA but it has been available for sometime in the UK

ITF Pharma has received marketing authorisation for the use of Tiglutik, a liquid form of riluzole, by people with MND in the USA. This form of riluzole is already available in the UK under the name of Teglutik, provided by Martindale Pharma, making this treatment more accessible to people with swallowing difficulties.

I do wonder if there's some confusion with the pricing of tablets and the liquid.

Love Terry

Kayleigh
25th January 2019, 12:38
Hi Terry,

Thanks for the useful information. I was given Sun Pharma for a while but have been issued with Rilutek lately. Probably because it is much cheaper. Sun Pharma seems to be a lot more expensive than Rilutek.
Love,
Kayleigh x

Ellie
25th January 2019, 15:08
If you check the NHS Drug Tariff, you'll see all brands of Riluzole tablets dispensed by a pharmacist are reimbursed by the NHS at the same amount (11.47 for January 2019) and the liquid version, in-patent Teglutik at 200, for the same 28 day supply.

IDK how, or if, pharmacies calculate or set dispensing fees in the UK.

Love Ellie.

Kayleigh
25th January 2019, 15:58
Hello Ellie,

Many thanks for the interesting and enlightening information.

It sounds like if a pharmacy is unable to order our preferred brand of tablet, this could be due to a factor such as availability, rather than cost.

I hope you and your family have a lovely evening.

Kayleigh x

Iron Will
28th March 2019, 19:30
having nightmares with this. can't find a stockist for any brand. Boots have promised me some tomorrow, lets see. all about money this.

I have rang Salford Royal to see if they can help. awaiting a call back.

I asked my local chemist if he could sell my wheelchair when i'm dead as it may release funds for the next victim : )

Ellie
28th March 2019, 20:28
Hi Will,

If you still can't get Riluzole tomorrow or have problems with its supply again, the MNDA have a deal with Dialachemist which guarantees supply of the drug.

This is an extract from an MNDA Info Sheet (05a):

The MND Association monitors disruption in the supply of riluzole and would appreciate any information related to this subject should you have any problems.
Please contact our helpline, MND Connect, if you experience supply issues.
Our arrangement with Dialachemist is one of the ways we have tried to ensure an improved supply (see next heading).

Dialachemist: free home delivery prescription service
In the past, riluzole could only be distributed by one licensed supplier, but this is no longer the case. As a result, the MND Association has negotiated a home delivery prescription service with Dialachemist Ltd.
This NHS registered online pharmacy is fully regulated by the General Pharmaceutical Council (GPhC). They are staffed by fully qualified pharmacists and technicians and deliver direct to your home or other nominated address across the UK.

The benefits are:
free home delivery (no delivery cost to the recipient)
a service tailored to individual need
guaranteed on-going supply of riluzole
direct interaction with trained professionals to address any concerns.

The Information Sheet in full : https://www.mndassociation.org/wp-content/uploads/2015/07/05a-riluzole.pdf

Good luck.

Love Ellie.

JimWright
30th March 2019, 09:08
Just how much dose a box of this actually cost? Went to 5 chemists to get a box.

Ellie
30th March 2019, 11:24
Jim, Riluzole tablets cost 11.47 per box of 56.

Love Ellie.

Iron Will
31st March 2019, 17:12
that's great Ellie thank you. Boots came up trumps last night, I got a months supply. will bookmark your post as to avoid any further worries. I am not usually one to panic but was rattled there for a while.


thanks again.

Doug Carpenter
1st April 2019, 18:44
Today I received my usual 3-month's supply of Riluzole via Pharmacy2u. Various random makes have tended to turn up, which is not a problem for me. But this batch is a new make "Mylan".

My only complaint is the ridiculously large box: 145 x 85 x 35 mm.

Doug

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