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Katrina36
23rd March 2016, 15:13
Hi everyone, my mum is wanting to ask this question about rizolule, it says on the box for it to be taken 1 hour before food or 2 hours after, does everyone stick to the rule or can it be taken at breakfast time with the rest of medication to reduce the amount of times he has to take all medications or to stop going into the peg so often?,,, thankyou... Katrina x

Terry
23rd March 2016, 15:22
Hi Kity;

I try to follow the guide lines but I do what fits sometimes. They are OK with food but they probably don't work so well. If he has trouble taking them they are OK to take with a spoon of something. Or crush them and put through the feeding tube, mind you you can also get a liquid for that. Some makes have better coatings so they don't dissolve in the mouth so quickly.

Love Terry

Dude
23rd March 2016, 15:28
Kat I just take it morning and night with other meds. Dude x

Ellie
23rd March 2016, 15:39
Katrina,

Yes, Riluzole should be taken on an empty stomach for maximum absorption of the drug.

xx.

Katrina36
23rd March 2016, 17:53
So do you all think it's better just to take it as stated then to get the full benefit from it, I'm always trying to find ways to make this mnd easier for him... Kat x

miranda
23rd March 2016, 18:15
I was told to flush water through the PEG between each medication and better to get liquid version rather than crush tablets

Katrina36
23rd March 2016, 18:26
Hi Miranda, I was always told never to crush tablets through my sons peg, so I was lucky enough to manage to get rizolule in liquid form :).. Dad in the morning goes I've to the yard, now if mums not there when he goes he can't put it down himself in peg as he's to weak to open and close clamp which I put on a different thread, so I was wondering if it was possible to take it anytime orally?.... Katrina x

Dude
23rd March 2016, 18:40
http://www.mndscotland.org.uk/wp-content/uploads/2012/02/22-Riluzole-2012.pdf
x

Katrina36
23rd March 2016, 23:18
Thanks for the link :) .. Kat x

mags55
24th March 2016, 00:22
Hi Kat
I had no idea that it should be taken on an empty stomach, I've always taken it straight after my breakfast and last thing at night.
Also, I asked my GP for liquid rilizole, which gave me, but when I told my nuerolgist, she was shocked as it is very very expensive, especially as I put it through peg? But the tablet form is hard to dissolve, it's leaves bits of the coating in the syringe.
Xx

Katrina36
24th March 2016, 01:57
Hi mags, yes it says an hour before food or 2 hours after, I didn't realise it was so your body got better absorption from it until Ellie told me today. I was also autopsies we got the liquid Riluzole as I heard it was very very expensive aswell, but didn't complain when we got it, dad says when he puts it in his mouth a lot off it ends up sticking to his tongue, but we have managed to mix thick Greek yogurt and blended cashew nuts into it and it's a good texture to hide the tablet in for him :).... Katrina x

Dude
24th March 2016, 08:37
Be nice in ensure Kat lol. Dude x

Katrina36
24th March 2016, 12:12
Lol Dude :D,,, you sure you don't own them lol :D:rolleyes:... Kat x

Dude
24th March 2016, 14:16
I'm enSURE.

Katrina36
24th March 2016, 14:20
Lol, you could be a good advertiser for ensure hahaha!... Kat x

Dude
24th March 2016, 15:33
I'm not enSURE about that Kat x

JAN Q
30th April 2016, 19:15
Hi mags, I have just read your post and I am so pleased to hear that we can get riluzole in liquid form,I have not taken any of mine since I had my rig fitted ,as the first time tried to put it through it blocked my tube and took my son 2 hours of struggling to clear it ,it was quite frightening as nothing would go in or out. We ground the tablet to fine dust but when eventually my son did clear it it spurred out and had coagulated into lumps. Consequently I will not risk it again,as if it happened again I would not be able to do it myself, now my nurses have requested liquid form but I am still waiting after nearly three weeks.
So I am more hopeful now that I may get it eventually.
Xx Jan Q.

Terry
30th April 2016, 19:31
Hi Jan;

Some makes of Riluzole have more of a coating than others. When putting other thing make sure they are well diluted and push plenty of water down. I got mine blocked with a liquid antibiotic, it acted like a custard powder, in that it went solid under compression, even when diluted with the same amount of water.

Love Terry

Dude
30th April 2016, 19:33
Jan You need to push people. Dude x

mags55
30th April 2016, 21:08
Hi Jan
My GP gave me the prescription for liquid Rilizole but when I told my nuerologist, she didn't seem to be that happy, she told me it is very expensive, it should be for people with no peg and can't swallow the tablets. But I am continuing with the liquid as the tablets were hard to dissolve. Can your GP prescribe them for you?
Mags x

voicegirl
31st January 2017, 11:55
hI ,

My mum is taking this and it makes her very tired is this normal ?

Barry52
31st January 2017, 12:02
Hi Voicegirl,

This drug affects different people in different ways. With some there is little side effects but with others it can cause drowsiness and nausea. Your mum may have to persevere for a while until her body adjusts.

Best wishes,
Barry

Ellie
31st January 2017, 12:41
Hi Vg,

Yes it makes me a little tired for about an hour after I take it. I don't have any other side effects.

Ellie.

Terry
31st January 2017, 14:34
Hi Voicegirl;

I never noticed any difference but I would try to take it for a couple of weeks and then see her Doctor. I don't think that there is a great problem coming off the drug for a couple of weeks after that so you could then get a comparison. But check with her doctor or specialist before doing that.

Love Terry

voicegirl
8th February 2017, 10:39
Morning,

Can any one else tell me if they have some one or themselves takes this and side effects are severe tiredness and increased speech slur.

My mother has trouble with her speech already and I understood this medication would slow the symptoms down and it seems to have done the opposite :(

I can no longer understand what she is saying on the telephone if I ring her in the evening. I am going to try and talk to her this morning as she says she is better in the morning before she takes the medication .

Thanks in advance

Lisa

Barry52
8th February 2017, 13:11
Hi Lisa,

It is unlikely to be the medication affecting your mum's speech or tiredness. Just getting through normal daily activities like eating, drinking, getting dressed and toileting take their strain and by the end of the day your mum will be exhausted. It's good that you are ringing her in the morning. Does your mum use a computer and if so, speaking via Skype may improve communication?

Barry

Ellie
8th February 2017, 13:12
Hi Lisa,

There's no hard & fast rule for Riluzole. It's said to add 10% to one's life expectancy and works better in some people than others.
It's very subjective as who knows what your mum's progress would be if not taking Riluzole.

If she is tired, everything is more of an effort, including talking. You could talk to her Clinic about taking a break from the Riluzole to see if she has more energy and then she can make a decision as to continuing on it or not.

She will need some communication device asap.

Ellie x.

voicegirl
8th February 2017, 13:49
Thank you for your replies ,

its been a frustrating few weeks, firstly mum was set home after they had no bed when she was booked in for her PEG to be fitted. Now I cant talk to her on the phone :(
It made no difference talking to mum this morning and we both ended up getting frustrated which resulted in mum getting emotional which makes it worse .
we have discussed skype but my brothers and sister think it will be no good as she will still have to speak.
I hope she gets her text to voice app soon

New op date is now 13 feb Fingers xed they have a bed this time.

Jan
8th February 2017, 20:23
You could Skype, if she can still write she could show you what she wants to say by holding it to the Skype screen

Terry
8th February 2017, 20:26
Hi VG;

Sounds silly but can she email. It is one of the best things for some of us.

Also, it's important that she has a Speech and language therapist, to help her get things.

Hope all goes well on the 13th.

Love Terry

Barry52
9th February 2017, 11:00
Hi Lisa,

Don't forget to insist on the provision of a communication device for your mum. Just mention AAC which is the acronym for Augmentative and Alternative Communication. It can be a postcode lottery but the NHS are compelled to provide this.

Best wishes,
Barry

voicegirl
9th February 2017, 11:32
Thanks Barry

I will let my sister know as she will be with mum at the hospital ect as I am too far away

:)


Hi Lisa,

Don't forget to insist on the provision of a communication device for your mum. Just mention AAC which is the acronym for Augmentative and Alternative Communication. It can be a postcode lottery but the NHS are compelled to provide this.

Best wishes,
Barry

voicegirl
9th February 2017, 11:37
Hi Terry,

Yes she does have a speech therapist I'm hoping she will get mum the app she need to help her communicating

Thank you


Hi VG;

Sounds silly but can she email. It is one of the best things for some of us.

Also, it's important that she has a Speech and language therapist, to help her get things.

Hope all goes well on the 13th.

Love Terry

miranda
9th February 2017, 13:27
I skype my sons and grandsons. They talk, I type a reply. The screen tells them I'm typing so they know to wait before they speak again. Marvellous! Imagine how difficult it must have been a few years ago when none of this technology was available.

voicegirl
10th February 2017, 09:35
Oh , Didn't realise you could do both at the same time :o


I skype my sons and grandsons. They talk, I type a reply. The screen tells them I'm typing so they know to wait before they speak again. Marvellous! Imagine how difficult it must have been a few years ago when none of this technology was available.

njm
13th February 2017, 14:53
BARRY:
I HAVE SENT YOU ANOTHER PRIVATE MESSAGE INQUIRY ABOUT IPREDICTABLE.

Charles

Terry
13th February 2017, 19:15
Hi Charles;

I have replied on another more ( I think) fitting forum.

http://forum.mndassociation.org/showthread.php?7023-Communication/page3&highlight=predictable

Love Terry

Bern
16th June 2017, 20:25
In a bit of a panic. I've been taking Riluzole for a month and had my first blood tests yesterday. At just before 6 tonight, the GP receptionist phoned to say the doctor wanted a telephone consultation with me next Tuesday afternoon after 2:30 to discuss the liver results. I asked if I could come in to the surgery and was told no and that the doctor would decide that after the telephone consultation. I now have the whole weekend to think about it. I must say my consultant and entire team have been absolutely fabulous but the GP hasn't shown an ounce of empathy and I would go as far as saying that he is totally disinterested. Sorry - I just had to get this off my chest.
Bern x

Terry
16th June 2017, 21:30
Not so nice to be told at 6 pm Friday Bern;

I guess if the results were really bad he would say stop taking riluzole now or reduce it to one tablet. Maybe try to see him face to face and make a list of any questions that might be relevant.

Good GP's are hard to find, mine is quite good but I did have an excellent one for just over a year.

Love Terry

Ellie
16th June 2017, 21:42
Hi Bern,

How awful you've to wait more than 3 days worrying about the results - shame on your GP :mad:

It is important to have your liver enzymes measured while taking Riluzole, but one can only suppose your results might possibly be marginal, otherwise he would have advised you to stop taking it.

There's no call for him to leave you panicking for days if he doesn't intend to talk to you until Tuesday afternoon!!

Try not to worry.

Ellie x.

Bern
16th June 2017, 22:12
Thank you Terry and Ellie. Our son and daughter-in-law have just visited and think we should change GP. It's not nice to have the worry over the weekend. Imagine if people don't have family support or don't have the support of this forum.
Bern x

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