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Chrisp
13th April 2017, 15:15
Hello,
Starting taking Riluzole tomorrow morning the consultant has prescribed the following:
Week one, one tablet in the morning
Week two onwards, one tablet in the morning and one in the evening.
After three weeks I am to go for a blood test.

I am currently in Italy and I was wondering how simple will the transfer to a UK Hospital and a prescription for Riluzole be.

Ellie
13th April 2017, 16:47
Hi Chris,

Be aware that Riluzole might make you tired/sleepy for a while after you take it, so bear that in mind.

Hopefully someone has first-hand experience of moving to the NHS from another country and will post. In the meantime...

I guess you first have to register with a GP, if you aren't already, and they'll refer you to an MND Care Centre. It would be helpful to bring your patient notes from your Neurologist with you (translated) although with the infamous Italian bureaucracy, that may take forever.

I'd advise you to bring a few months supply of meds with you if you are not registered with a UK GP. You won't have an issue getting Riluzole for ALS/MND in the UK.

Good luck,
Ellie.

Terry
13th April 2017, 19:39
Hi Chrisp;

Someone has done something similar in the last year but I can't remember who.

I would follow what Ellie says, also Mnda connect could help if you have problems, email :- mndconnect@mndassociation.org

I was advised to take Riluzole, 1 hour before or 2 hours after eating if I can. I have had it with food etc. Some say it makes you tired etc but along with others, I don't think that it's affected me.

Love Terry

Chrisp
15th April 2017, 13:42
Does anyone take supplements when they are on Riluzole? The consultant looked horified when we explained that prior to the Riluzole I had been taking AAKG tablets, Coenzyme Q-10 and 5-HTP (the last one is not a good idea with riluzole). And alcohol is verboten!

ccinjersey
15th April 2017, 19:14
Hi Chrisp

You should take a look at the 'Deanna Protocol' I think some of the supplements you're taking are on there. You can also go to their website 'Winning the Fight' about this illness and supplements, they have information on the subject as well.

CCxx

John14
15th April 2017, 20:46
Chrisp,

I don't think that you need to avoid alcohol, just ensure that your usage is not excessive with Riluzole you do need to keep an eye on your liver function by taking regular blood tests. I think it is important to take your pleasures where and when you can, I still enjoy a glass or two of wine or a pint of beer but don't drink as much as I did when I was well.

SMT
17th April 2017, 23:21
I was just given the prescription and have dived straight in and taken a tablet twice a day for the last fortnight. Am knackered but I refuse to give up my wine!:)x

Terry
17th April 2017, 23:28
I started on two a day as well SMT:

Glasses of wine that is and Riluzole as well.

Love Terry

Tilly Mint
27th April 2017, 01:26
I'm still drinking. Two weeks into Riluzole Nausea and headaches. But sticking with it

Pinkelle
27th April 2017, 12:49
I found my head felt funny when I started taking them. Like a wave feeling just for a split second. Reduced the tablet to one a day and feel better. My gp has sent a message to my consultant to see if this is a good idea and will increase back to two. Not heard a thing back!

Terry
27th April 2017, 16:39
Hi Tilly Mint and welcome to the forum;

How much are you drinking to get Nausea and headaches. It could be something to do with the Riluzole if it's only started two weeks ago.

Ask about coming of it for a few weeks and trying it again or maybe taking one a day like Pinkelle.

Pinkelle, I would have thought that your GP could advise you and monitor you regards to Riluzole. I am sure that they have the info and specification of it.

Love Terry

Pinkelle
27th April 2017, 17:09
Hi Terry. My Dr didn't know when I asked him can I reduce, so he sent query to my consultant weeks ago. I've rang but the consultant hasn't got back to him. I've got mnd clinic in a couple of weeks so I can ask then. Really want to take the riluzole.

Ellie
27th April 2017, 17:22
Pink,

Riluzole is active in the body for 12hrs, hence it's taken 2x a day. There is nothing to stop you taking just one Riluzole per day on a short-term basis and see how it goes, then decide what to do.

You may find that lying down for half an hour or so after taking the tablet will mitigate your wooziness.

Good luck with it.
Ellie x.

Pinkelle
27th April 2017, 20:40
Thanks ellie. I'm sure if I start taking another one it will be OK.

Devonmaid
17th February 2018, 08:55
Tony has been on riluzole for nearly 4 weeks now and to be honest he is getting weaker than before - I am even wondering if he should come off it - has anyone else had this problem?

Annb
17th February 2018, 10:00
Hello
As Riluzole is the only drug available unless Tony has really adverse side effects consider sticking with it a bit longer. I had digestion problems for several weeks when I started taking it and was very tired then it stopped, so it possibly takes time to adjust. Consultants vary in how much faith the have in Riluzole.

I have just tried Baclofen for cramps. After ten days taking one each night I could not get out of bed. I felt hung-over and lost interest in doing anything. so have stopped taking it. It has taken me a week to begin to feel normal again. However, I know some that many people do not have a problem with Baclofen. Everyone's body tolerates drugs quite differently.

My GP has given me an alternative drug but I am wary of taking anything at all now.

I hope Tony stabilises quite soon. I was told that Riluzole has a longterm effect and extends tife but not to expect to notice a slowing down of symptoms. MND follows its own path. What an awful illness this is. Tony is so lucky to have you to care for him, but do take care of yourself.

Love

Annb

Ellie
17th February 2018, 15:56
I have just tried Baclofen for cramps.

My GP has given me an alternative drug but I am wary of taking anything at all now.

Hi Annb,

There are much better meds than Baclofen to counteract cramps. Baclofen works well as an antispasmodic, and should be started at a minimal dose (5mg max) and gradually increased, giving the body time to adjust to the drug.

Quinine Sulfate or Magnesium work better on stand alone cramps. May I ask what med your GP prescribed for you?

Love Ellie.

Ellie
17th February 2018, 16:17
Tony has been on riluzole for nearly 4 weeks now and to be honest he is getting weaker than before - I am even wondering if he should come off it - has anyone else had this problem?

One of its side effects is fatigue, which would make Tony feel weaker. It does take several weeks for one's body to get used to the drug. People sometimes are told to just take 1 Riluzole tablet for the first 2 wks, then introduce the 2nd tablet.

He should be due his first monthly blood test to check his liver function, so that will identify any problem there.

If Tony really doesn't get on with Riluzole, it's not exactly a miracle drug, so he shouldn't beat himself up about it if he stops taking it, but give it a good try.

Ellie x.

Annb
17th February 2018, 19:12
Hello Ellie

I was put straight onto 10mg of Baclofen to be taken at night which might well why I felt so dreadful if you suggest it should only be 5mg. I had been using Ibuprofen as necessary for discomfort but my GP changed that to Naproxen night and morning. I think the combination of both together may have caused my problem. He felt Ibuprofen was not recommended although all my blood tests were stable.

I collected my new prescription today and appear to have been given Clonazepan 0.5mg one to be taken at night. To my horror it states I must not drive. As I live alone and my car is essential so I have already decided not to take this drug. I am tired enough without dosing myself up!

I have begun to massage my legs with Magnesium oil. I have a bio-mat detox each week together with a session of reflexology. I am considering Canabis Oil too.

I very much enjoyed a visit to Dublin a few years ago with member of my Humanities Group. We followed the James Joyce walks. Beautiful City!

Take care Annb

Devonmaid
18th February 2018, 09:12
Thanks for the advice Ellie - blood test on Friday I believe x

Ellie
18th February 2018, 13:10
Hi Ann,

Clonazepam is a benzodiazepine (a tranquiliser, hence the driving warning) medicine, so will send you to sleep rather than treat your cramps.
Your GP needs to prescribe a medicine that acts on your underlying symptoms, i.e. cramps, and not just give you meds to knock you out :mad:

Normally Quinine Sulfate or Magnesium work well on cramps, both of which can be prescribed. Painkillers don't do much for leg cramps either. Massage with magnesium oil is helpful as a short-term fix on a smallish cramp, and taking CBD oil works for many people too.

I am not a doctor Annb, but have had years of trials and tribulations in dealing with my ALS/MND symptoms!!

Ellie x.

Annb
19th February 2018, 16:09
Thank you Ellie I really appreciated your advice. I contacted my Consultant at the NHMM and your advice was confirmed.

I am returning to my GP and am to ask for Quinine Sulfate. I must admit my confidence is a bit shaken and I will double check everything I am prescribed in future. I am tired enough with out taking a sedative!

Thanks again Ann X

Ellie
19th February 2018, 16:29
You're welcome Annb.

It's a bug bear of mine that very many doctors do not treat the cause of one's pain and are happy just to mask it with sedatives or unnecessary opioids - grrr!

Re your fatigue: you could maybe do with increasing your calorie intake for this stage of the disease, to keep up with the extra demands on your body. Also, have you had Pulmonary Function Tests (PFTs) recently?

Ellie x.

Devonmaid
19th February 2018, 19:54
Thanks Ann - he is going to stick with it

raymond
12th April 2018, 14:27
Hi all
I wonder if anyone else has experienced problems with different brands of Riluzole . I have been taking it three months without any side effects and last week was sent Glentek . I have been troubled with urinary problems since taking it and just wondering if is a coincidence. It is not like an infection, just feeling like I need to go and not been able to go when I get there. It is only in the late afternoon and evening though . the morning and through the night I have no problem.
I know it sounds strange , and is a long shot but it coincides with taking the different brand. I will go to the GP if it doesn't get better.

Best wishes
Love Chris

Ellie
12th April 2018, 16:07
As you say Chris, it may be just coincidence...

The Glentek brand does generate criticism due to its different type of coating, but mostly oral numbness and GI issues.

Urinary urgency isn't one I've heard of being associated with Glentek Riluzole, maybe someone else has?

If it persists, yes, see your GP. If the issue can't be identified, switch brands and see if it resolves itself. If it can be attributed to Glentek brand, you can Yellow Card it.

We've enough to contend with without that afternoon wee dance, so I hope you get it sorted. FYI Some people do get bladder spasms with MND - it's an UMN symptom, for which I'm sure your Neuro can recommend meds.

Ellie x.

raymond
12th April 2018, 16:58
Hi Ellie
Thanks Ellie I made an appointment this afternoon with the GP for next week .See how it goes I can always cancel if it gets better .
Hope you are doing ok if you are still in the hospice on respite .
Love Chris

Ellie
12th April 2018, 17:02
Home tomorrow Chris :D Can't wait to sleep in my own bed. I even miss the kids squabbling!!

Terry
12th April 2018, 17:31
Hi Raymond,


Glentek ones have a very poor coating so I would change the brand as soon as possible if melting in the mouth.

I have on my repeat prescription:-

Riluzole Teva 56 x 50mg (ONE TO BE TAKEN TWICE A DAY (NOT GLENTECH BRAND prefers teva or actavis), 56 tablet) The original Rilutec ones are good as well.

Glentek has a poor covering and is quite likely to melt before swallowing properly. These could be good if crushing them to put down a feeding tube but you can sometimes get a liquid Riluzole for that.

Ask your GP to prescribe "Teva" branded riluzole or if not "Actavis" branded ones.

Get him to do that straight away and stop taking the Glentek ones when the new ones come. Keep a few weeks supply when you reorder as there can be some delays.

Love Terry

raymond
12th April 2018, 18:50
Thanks Terry
Must admit it has melted in my mouth a couple of times . Not sure it is the tablet that is causing me the problems though , but will discuss with GP if it carries on .
Love Chris

Peteb856
14th July 2018, 20:25
Is everybody bitten by the same bug, put Riluzole down at every chance. I have been taking since my diagnosis last October, twice a day with regular blood tests (LFT's). I take a multitude of other things alongside as I have long term Prostate Cancer, plus the mild anti-depressant for the moods/emeotions. I drink what I like when I like, it's horses for courses, remember we are all different before MND and even more with MND. Don't be dictated or advised by the long term warriors, nothing against them. You are the one in question taking the drug or whatever, if it fits great, if it doesn't, don't do it, try something different. I have come to realise there are some great people with MND, great socially, put some like there soap box and preach what everyone should be doing. Remember we are all different, individuals, positivity and humour a day at a time.

Terry
18th August 2018, 13:03
I have been given a different kind of Riluzole, made by Sun Pharma MA Holder Netherlands.

Will report my findings soon.

Love Terry

Marigold
22nd August 2018, 17:58
Hi Terry,
I have just collected my first pack of Riluzole and they are the same type - Sun Pharma.
How are you getting on with them?
I can't start taking them until 12th Sep. I will take them for 3 months as preamble to the Mirocals.
My chest is just beginning to feel rather tight and my cough is rubbish now, Sounds like a dog toy being squeaked!
Marigold

Terry
22nd August 2018, 18:51
Hi Marigold;

They seem OK and you have a fair bit of time to swallow them. 12th Sep is a little wait but it's good to finish the Mirocals trial first.

Some maybe a quarter of the people have trouble starting on Riluzole and start by taking one a day for 2 weeks. I am one of the 3/4's that didn't have any trouble.

Be careful of your chest and get it checked out if it doesn't improve very soon. My cough tends to be a quite violent affair which is good for me and not others.

Love Terry

Marigold
22nd August 2018, 19:01
Thanks Terry for the advice.
I don’t get the Mirocals until 3 months of riluzole.
And I have to have all the flippin tests done again on 12th including the LP. Grrrrr!
Will keep you posted!
Marigold

Terry
22nd August 2018, 19:37
Hi Marigold;

Please explain why you have to wait to take Riluzole then?

Sounds like people have got their wires crossed to me.

Love Terry

Marigold
22nd August 2018, 21:00
Well you can only be eligible for the Mirocals trial if you have never started on riluzole. Then you have to do a bank of baseline tests and begin the riluzole then. After 3 months to see how you tolerate it you then begin the trial injections.
I think it’s a way of setting the control for the science!
Marigold

Terry
22nd August 2018, 21:34
Oh, I see;

I guess it's hard to get the timing all correct. I am surprised that they got enough people to do it. Fingers crossed that it all works.

Love Terry

Marigold
22nd August 2018, 22:13
I was told I am the 14th person from Sheffield. So statistically 7 of us will be having a placebo!!
Will let you know how it goes !

Terry
30th September 2018, 17:35
Oral suspension of riluzole approved by FDA

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.

Ellie
30th September 2018, 18:24
Hi Terry,

Some Forum members have had a very hard time getting liquid Riluzole prescribed in the U.K. as it is SO much more expensive than in tablet form.

So, yes it's available, but some people have to jump through hoops to get it :mad:

Love Ellie.

Terry
30th September 2018, 21:47
Hi Chimp;

Not sure of the costs involved and some people do get it offered and some, as you say have to jump through hoops.

At least people know what it's name is and the maker, some doctors don't seem to know it exists.

Love TC

Terry
1st October 2018, 01:58
Yes Ellie, you're right,

It would appear that the liquid costs 100 for the equivalent of 30 tablets and most brands of riluzole cost 14.80 for 56.

Very strong insentive not to supply the liquid form.

My figures could be wrong.

Love Terry

Ellie
1st October 2018, 14:40
Yep Terry, it over 100 more expensive, per month, for the liquid form of Riluzole - it's on patent. x

Marigold
5th October 2018, 10:54
Hi Everyone,
I am now taking my riluzole and have experienced no side affects so far ( a month in),
I was not given much guidance on when to take it other than every 12 hours to suit me.
My question is, should I be taking it on an empty stomach?
I haven't been! I have read this somewhere but am not sure if this is to minimise side affects or to maximise efficacy?
Can anyone advise and should i change routine?
Marigold

mickmac
5th October 2018, 11:47
Hi Marigold

I've also heard that taking Riluzole on an empty stomach can help with the efficacy of the tablet. The usual recommendation is to take the first tablet as soon as you wake up and don't eat anything for an hour afterwards. Then for the evening tablet wait until two hours have passed from your evening meal and take the second tablet. Again you shouldn't eat anything for an hour. I don't think it would make a huge difference so I follow the above advice reasonably closely but don't worry about it if say I eat something half an hour after taking a tablet.

Mick.

Lynne K
5th October 2018, 12:53
My pill taking didn't get set to be on an empty stomach but almost always is coincidentally. I take my morning Riluzole an hour before breakfast mostly because the alarm on my mobile is set for pill time. But today I got up before the alarm and so breakfast my usual hour or two later (a life long habit) fell about half an hour before my pill. My evening one is similarly almost always on an empty stomache but if we occasionally decide to have a little supper it has sometimes been taken just before, just after and once with food. The reason that they say take on an empty stomach could be airing on the side of caution seeing as it states somewhere or other to avoid things with calcium in when taking Riluzole ie anti-acid medication as it is usually based on calcium carbonate. I am open to be corrected as this has been a learning curve. Lynne

Ellie
5th October 2018, 13:00
Hi Marigold,

As Mick says, Riluzole is best taken on an empty stomach. This is because fat reduces the absorption of the drug by the body.

However, the Patient Information Leaflet enclosed in each box of Riluzole makes no mention of this fact, so if it makes you feel queasy, it's better to take it with a light snack, rather than not at all.

The fat V absorption data is on the Summary of Product Characteristics for Riluzole - a more in-depth analysis for meds and available online.

Love Ellie.

Marigold
5th October 2018, 13:50
Thanks Everybody,
I will plan to eat on empty stomach then.
Though this will probably end up being a challenge in itself as I always seem to be really hungry nowadays!
Marigold

Terry
5th October 2018, 19:00
Hi Marigold;

Like Mick I try to take it on a empty stomach, ie two hours after or a hour before food. I read somewhere that it works better by 35 % taking it that way. But like Mick I don't get hung up on this and sometimes take it very close to eating and 10 hours apart.

Do what suites you and fit it in the best you can.

Love Terry

Catsparkle
22nd October 2018, 21:08
Hi Guys, I've only seen my consultant once and he said he'd put me on riluzole if I wanted but was quite dismissive of it. If I enter a trial I'll be taking it then, but what do you think of it?
Thankyou,
Lisa x

Jaxx
22nd October 2018, 21:54
What trial are you entering? Most trials I’ve been aware of say you have never had to have taken Riluzole. My daughter got the liquid form from her consultant no problem,

Ellie
22nd October 2018, 21:54
Well, it's the only licensed med for ALS we have in Europe atm, so I'm all for it, but it is up to each of us what meds and interventions we do or don't want to take/have.

It's best started as early as possible in the disease and although the trial results showed a measly 3 month extension in life, it's not known how accurate that is.

It is thought to delay the need for NIV.

You do need regular blood tests to keep an eye on your liver enzymes.

Love Ellie.

Catsparkle
22nd October 2018, 22:12
Hi Jaxx, that's what I meant, that I wouldn't be able to take it if I wanted to do a trial,but would be exoected to when on it. Mirocals is the one Ive been asked about but it sounds quite difficult compared to others I've read about (but can't go on!)

Hi Ellie, I'd definitely be interested in delayed progression and NIV. The consultant and MND people didn't feel they'd seen a significant difference in life span, but that's anecdotal I guess. I guess if Mirocal is the only recruiting trial in my area i could start on Riluzole, or wait until after the MND conference and see if there are others in the pipeline. Although from what I've read, earlier intervention is better..

love Lisa x

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