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Hazelnut
21st August 2013, 11:04
I was diagnosed with Bulbar MND in June. I am going back to the consultant next week and in June he mentioned Riluzole but quickly said about it may damage your blood count etc.

I have read the MND leaflet on Riluzole but if anyone has any ideas on taking - or not taking it it would be a great help.

For example do people get the side effects it lists.

Can you still drink alcohol and take Riluzole - I need some pleasure in life!

Does it affect driving?


Many Thanks

Hazelnut

pete
21st August 2013, 11:12
Hi Hazelnut,

Well as it is the only one on offer, I take it, many do not ,it's what you think suits you, you are monitored for a while for liver function, and yes you can drink and no affects driving wise so I took the view why not !!, it's if it suits you, as far as if it works ,who knows I don't have any qualms ,but some do .

Terry
21st August 2013, 11:13
Hi Haze;
If you are fit and well take it. If you have liver or kidney problems don't. Most people don't have side effects but it is no wonder drug. You can still have alcohol but try to keep it under a bottle of gin a week.
And it will not make you drive better, love Terry

Arthur
21st August 2013, 11:55
Up until a few weeks ago I was taking Riluzole with no side effects, no impact on my driving or my alcohol consumption.

My last Liver function test had some concerns so my GP has stopped Riluzole to see if it is the culprit (this is a known side effect). I would hope to be back on it in a few weeks. I took Riluzole for almost ten years without any noticable side effects, my advice would be to give it a go!

Arthur

Cookewitch
21st August 2013, 11:55
When my dad we were told it wasn't an option, but no reason why it wasn't. Dad was diagnosed with PMA with bulbar onset. We've seen two neurologists due to him relocating to live with me and they both ruled it out.

pete
21st August 2013, 16:41
Hi CW,

I don't know why either , as it's normally given to Bulbar onset in the hope it delays the onset of ventilation ,as Bulbar normally is one of the more quicker forms, Not sure about your Dads condition ,maybe as PMA is much slower progression ,it's not thought it will give any benefits ,No one has ever explained the reasons or what Riluzole actually does ,to be honest I don't think the Neuros do either ,it's a case of if it don't work you can't prove it and if it does work the risks in taking it for some are so small nothing is lost ,in trying it ,I do know Cost was a big Factor when it was first tried out ,But since, we have many companies making it now ,and The Lord only knows what is in it now ,the cost per tab is a lot less, so I doubt that money comes into the descision. Maybe they know something ,there not telling us ?.

Hazelnut
21st August 2013, 18:08
Many thanks for all the good words.

Decision made - If it is offered to me I will take it.

Hazelnut

Hazelnut
2nd September 2013, 17:27
Just back to the Neurology Consultant and am now taking Riluzole - with no side effects so far !!

Swallowing it is a bit difficult as it wanders round my mouth like a loose canon not sure what hole to go down!! But I discovered a new trick - put the little tablet in a spoonful of yoghurt and it all goes down a treat.

Kind Regards to all.

Hazelnut

Lilylou
2nd September 2013, 17:33
My husband Robert enjoys his nightly Riluzole with his dinner and a large glass of wine so far it goes down a treat.

Lilylou xx

ian
3rd September 2013, 06:52
If you have difficulty swallowing don't let the tablet start to dissolve in the mouth or it wil anesthetise the mouth.

Ian

Terry
3rd September 2013, 18:30
thanks for that Ian;

I'll try it out on my wife.

Cheers Terry

pete
3rd September 2013, 18:43
Hi Terry,

Save the tab, I have tried, and it isn't that strong !!.

ttmusic
3rd September 2013, 18:54
Hi Hazelnut,

I'm on Riluzole. The side effects were detailed to me in Hospital. (Liver problems and white blood count problems). My discharge was sent to my Doctor to monitor my blood and my wife and I keep an eye on the chance of yellowing of the eyes/skin. The merits of being on Rilzole, if it does what I read, are beneficial in that the damage to further Motor Neurones is minimised.

I recommend you ask your own Doctor, as medical information, first hand, is more informative.

Tony. (ttmusic).

ian
4th September 2013, 06:39
I now have to take my medications via my PEG. The new tabs seem to have a coating that blocks the valve to the tube. Anyone have any ideas how to deal with this?


Ian

Andrew
4th September 2013, 09:33
Hi all,

On the subject of riluzole, our Information sheet 9 – Riluzole has now been revised and is available here. (http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%2009%20-%20Riluzole.pdf)

The revision includes additional information on the distribution of the drug. In the past, riluzole could only be distributed by one licensed supplier, but this is no longer the case.

As a result, the 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) and they are staffed by fully qualified pharmacists and technicians.

They deliver direct to the person’s home or other nominated address across the UK and this delivery service is free of charge.

If you need any help with this, don't hesitate to contact MND Connect on 08457 626262 or mndconnect@mndassociation.org.

Best wishes,

Andrew

koolsilver
4th September 2013, 10:15
When I was offered Riluzole I asked the doctor what benefits would it give me "None" he said, I asked will it extend my life expectancy "No" he said, so I took the view if it is not going to do me any good, why take it,do I really want to poison my body, for nothing.
So I am one who does not take it, however I do breathing exercises instead.
Sorry if this sounds harsh on the folks who take it, its just that I think it may have been one of my BP medications, that set my MND off and running, so I am working towards coming of all medication and going all natural.
To be Fair I shortened the doctors reply down in the above, but he did say it would not extend my, life and it would not give me any improvement to my condition, so you can imagine that I would say, I did not want take Riluzole

Terry
4th September 2013, 11:32
Hi Mike;
You must one hell of a doctor, not many know much about Mnd let alone the medication. I understand that Riluzole is the only thing that has gone through all of the trials and has show some affect on extending our lives. It is no wonder drug and can affect your kidneys and liver but most people have no problems. I can understand some people not taking it, especially if they already have blood or kidney problems.
It might be possible that the figures have been made to give a good result, but they were properly carried out medical trials.
It was a very expensive drug at over 10 per tablet and it is supplied and used in many countries.
I am most surprised that your doctor said that there is no benefit from taking the drug, other than perhaps his drug bill, although it is a lot cheaper now.
This comment is not against you Mike or any decisions that you make for yourself but for the Doctors that go against properly tested and trialed drugs.

Regards Terry

It is no wonder drug!

pete
4th September 2013, 12:12
Hi Terry,

Yes your quite right in what you say about Riluzole, Like any other drug, yes it can have side effects ,but being the only drug that's been proven to be of some benefit to some types of MND, I really doubt the wisdom of any Doctor that can say for certain that it will be of no use!!, begs the question why they bothered even issuing it in the first place, I doubt if the drug companies would have bothered if it was of no use, and I for one have been on it from Day One, no side effects as yet and still around , so if just a few benefit in some small way from taking it to delay the inevitable onset of ventilation problems then in my book it's worth every penny . It's a free country so if those who don't want to take it, no one is going to force them, But I feel that those who may want to try it are not put off by bad press .

Ellie
4th September 2013, 17:28
With Pete all the way.
I've been taking riluzole from the start, 6+ years and no side effects.
Some people in the U.S. would dearly love to take it but cannot afford to. We are lucky that our health services give us the choice.
Ellie.

phred bear
4th September 2013, 17:42
Hi Hazelnut,
Have been taking two riluzole a day for 9 months, no adverse effects at all. Good luck with it,
freda

Frank
5th September 2013, 12:05
I had an issue with my GP, when newly diagnosed. The consultant had given me my first batch of riluzole and then I tied getting my GP to write the repeats.
He wouldn't do it?? He insisted that the hospital did all my riluzole prescriptions on the basis of cost.
I wasn't best pleased with his attitude, as I was trying to hold down my job and not wanting to take too much time out going to different clinics / hospitals (hospital prescription could only be redeemed at the hospital pharmacy).
His attitude did not help the stress levels of a newly diagnosed person.

I am with Terry, Pete and Ellie, in finding something amiss with your doctors statement Mike.
Riluzole has been shown to decrease glutamate, which is thought to be a cause for MND.

I have had no issues with the side effects of riluzole; unlike the side effects that I've had with other meds that were supposed to help stop drooling.

Terry
5th September 2013, 18:38
Hi Frank;
After my first lot from the consultant my doctor prescribed it. Get on to Mnda, AV or your nurse and ask them to fight your case. They are not expensive now.
Hi Ian;
any luck with removing the coating or finding riluzole without a coating. What I thought was a big step forward was a backward one for people taking it through their Pegs.
I am sure that gin will dissolve the coating.
Cheers Terry

Laila
5th September 2013, 23:03
Hi terry

Can't give advice on gin dissolving the coating as I don't take Riluzole so can't trial the combination. It does seem to dissolve brain cells though. The gin that is.

Laila

john
6th September 2013, 21:04
Irene used to take coated tablets. We simply crushed them using a pestal and mortar used in food preparation and poured the resultant powder down the peg and flushed it through with water.

John

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