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PoetChristopherRobin
3rd August 2011, 14:34
Just an update I saw the specialist yesterday he wanted me to take the drug named Riluzole, remember this is not a cure as there is none but I’ve refused this as of the side effects listed below and besides it only helps by making muscles relaxed and will prolong your life by three months

But I’d certainly like to hear any comments on this Drug please, good or bad


Would you do you take Riluzole?

Riluzole is well tolerated by most people, but there are some side effects including:
Liver damage nausea vomiting weakness extreme tiredness headache dizziness numbness

stomach pain, low fever, loss of appetite, dark urine, clay-colored stools,
jaundice (yellowing of the skin or eyes); fever, chills, body aches, flu symptoms;
cough with yellow or green mucus; or stabbing chest pain, feeling short of breath

Alienista606
3rd August 2011, 15:52
Yep have some of this like dark urine, flu sympt. But all this is just small problems. Appetite is ok just small hint cose off temperature.
Biggest problem is a mucous .
MAC

ian
4th August 2011, 09:31
Hi Poet Christopher Robin,

Only effect I have had from Rilutek/Riluzole is acid reflux which is controlled by Gaviscon.
All the liver/kidney problems aremonitored by monthly blood tests for the first three months.

Best wishes,
Ian

Cath51
4th August 2011, 10:41
Mic has been on this for over 6 months, first few weeks he felt sick but carried on with it. Since then the nausea has gone but he still has a cough with mucus - having said that he has always had a smokers cough so it may be just that we notice it more as I think you start looking for symptoms (and dreading them). Anyway nobody has suggested that he give up smoking (except me)!

SON
4th August 2011, 13:51
hello
my mom whos age is 55 is taking riluzole 100 mg daily from month of march 2011... but still now i does not find any such problem from her side ? some time she told that her stomach burning for that she taking rabee regularly.

We'reinittogether
5th August 2011, 08:20
My husband was taking Riluzole. Started in January '11. Over the following months the frequency , urgency and looseness of his bowel movements became almost impossible to manage - he is wheelchair bound and has to be hoisted for every transfer. He had become anxious about leaving the house and even having visitors. At his last visit to see his consulltant in early July it was suggested he stop taking it for 2 weeks. He hasn't taken it since. The difference was apparent after about 5 days. He is back to a regular body rhythm - though he still needs to act fast when he gets the signal as his sphincter muscles have definitely been affected by the MND.(Something the neurologist refutes though quite a few of the other professionals agree about) At the time we didn't recognise this as a side effect of the drug but it It has made such a difference to the quality of both our lives since he stopped taking it.

Chris
5th August 2011, 15:00
Mic has been on this for over 6 months, first few weeks he felt sick but carried on with it. Since then the nausea has gone but he still has a cough with mucus - having said that he has always had a smokers cough so it may be just that we notice it more as I think you start looking for symptoms (and dreading them). Anyway nobody has suggested that he give up smoking (except me)!

The smoking will no doubt have to stop at some point, i too enjoy the odd ciggie ;) Polly hates it and gets on at me lol. There are a lot of things we will lose the ability to do and smoking is one (wont be able hold one much longer lol) Im sure Mic will agree when i say its a small pleasure we can keep for a while ;) yes we know its bad for us but what the hell!

G60dubber
5th August 2011, 15:37
Pleased I'm not the only one Chris. My problem is I can't roll my own anymore as my hands won't allow it, tried the rolling tins to no avail. Thankfully the mrs has become proficient at making my stock for the day as I hate normal fags. It's getting tricky to get my hand up to smoke, but where there's a will there's a way, I shall overcome ;-).

I went to the docs with a cough a while ago, doc asks if I'm still smoking and if so i should quit, my reply " What's it going to do, kill me?" he looked at me for a few seconds then the penny dropped and raised a smile from him :-0. It still makes me smile when I think about it.
IMHO, When the sense of humour goes it's time to quit...

Chris
5th August 2011, 15:57
Thats what i prefer mate, i use a rolling machine with great difficulty but i just about manage. Your lucky your mrs will do that, polly wont because she hates it lol my mate rolls them when hes here but after that im on my own! I was in the process of giving up when i got diagnosed, that all went through the window when i was told i had MND. Polly said to prof should i give up and she said, we would encourage anyone to give up but maybe you have enough to deal with at the moment. For now it makes me happy but i know giving up will be something i have to do at some point soon.

G60dubber
5th August 2011, 16:01
I did read that smoking inhibits absortion / speeds up excretion from the body of riluzole thereby potentially reducing it's impact.

sarahezekiel
5th August 2011, 23:05
Riluzole really upset my stomach and I did have more mucus.I didn't think that the mucus was from Riluzole at the time but it must have been. Don't like it and didn't take it for long.

Sarah

Robyn Copley-Hirst
9th August 2011, 11:34
I did read that smoking inhibits absortion / speeds up excretion from the body of riluzole thereby potentially reducing it's impact.

Hi Adie,

I saw your comment about smoking and riluzole, thought it was interesting, and asked one of our research information co-ordinators what she knew. She went away to double check everything and reported the following back to you all:

"There is a little bit of evidence in the literature (one study that I could find) to suggest that smoking might speed up excretion of riluzole by as much as 36%, thus potentially reducing its impact. However, I also found another study suggesting that smoking did not significantly influence the way riluzole is handled by the body.

What is clear is that there is huge variation between individuals in terms of how much rilzuole they end up with in their system at any one time, and that there are a number of factors that influence this. I would suggest that anybody who has concerns has a chat with their neurologist or specialist nurse."

So, it looks like you and Chris can make your own mind up about enjoying the odd smoke, there doesn't seem to be enough evidence on either side at the moment in terms of the effect on riluzole in the body with quite a number of factors all affecting each person.

Hope you all find that info useful,

Robyn

G60dubber
9th August 2011, 13:23
Hi Robyn,
thanks for validating this, I couldn't find the original document that I read to link to this. It is a moot point for me now in that I'm only on dex and not riluzole. Haven't found anything in relation to excretion rates for dex though. Maybe your techies have more source material on this?

Cath51
9th August 2011, 15:14
Mic smokes cigars (yuk) I mentioned it to Dr H when we were at Salford but he didn't seem bothered (perhaps he is a smoker too). Then again I would imagine it would be a struggle for Mic to give up (yet again) now he spends most of his time sat at home bored whilst I am out at work.

Robyn Copley-Hirst
9th August 2011, 15:28
Hi Robyn,
thanks for validating this, I couldn't find the original document that I read to link to this. It is a moot point for me now in that I'm only on dex and not riluzole. Haven't found anything in relation to excretion rates for dex though. Maybe your techies have more source material on this?

No problem, Adie. I'll ask research and get back to you.

Best Wishes,

Robyn

angnmick
9th August 2011, 21:43
Hi guys

G60dubber, Mick smokes rollies too,I remember asking him what he will do when he can no longer roll his own and his reply was that I would be fully trained at that point which I duly am LOL . Got to have some little luxuries to get you through. xx Ang

Chris
9th August 2011, 21:52
I must be doing something wrong! i best put my foot down lol

Peter
9th August 2011, 22:56
I have been on the Riluzole for about 10 months with no real side affects.Maybe darker urine but is that down to Riluzole or one of the other 5 tablets that I take. The thing that gets me is how do you know if it is working because you still deteriorate. It`s not a wonder drug that stops it.

angnmick
9th August 2011, 23:41
Mick was laughing at your comment Chris he said he couldn't put his foot down if he tried as the foot drop wouldn't let him, just love yours and
G60dubbers humour on here keeps us in smiles this end xx

Robyn Copley-Hirst
10th August 2011, 11:20
Hi Robyn,
Haven't found anything in relation to excretion rates for dex though. Maybe your techies have more source material on this?

Hi Adie,

You won't have found anything on this yet as the drug is too new for the kind of study that would answer the question for certain.

There are probably boffins at Knopp and Biogen Idec (the dex. pharma companies - which will be different to rilzuole’s pharmacology) who have a pretty good idea as to whether dexpramipexole would be affected by smoking. However, the studies on smoking and riluzole didn’t take place until after rilzuole was in general use.

So, there may be something looking into this in the future now it's in general use... but I wouldn't worry about it and as most people on the thread agree, enjoy the little luxuries you can.

Enjoy the rest of your day, everyone,

Robyn

miranda
10th August 2011, 18:18
Mick was laughing at your comment Chris he said he couldn't put his foot down if he tried as the foot drop wouldn't let him, just love yours and
G60dubbers humour on here keeps us in smiles this end xx

I would just love the occasional ciggy but can't keep one between my lips and can't inhale! B

G60dubber
10th August 2011, 21:18
They ought to make an adapter on a bipap just for this situation :-), where there's a will there's a solution ;-)

PoetChristopherRobin
13th August 2011, 15:06
Thanks all,

after the sound advice of so many will certainly be giving at a try next time I see the MND doc

you’re all stars

Madbird
10th October 2011, 11:31
hi

i have PLS and i took Riluzole for ten years and cld not tell if it did a thing or not. i don't take it any more but i never had any side effects either.

cheers, Louise

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