Riluzole

[Christoff]

Hi There, is anyone else on Riluzole and have there been any side effects?

I was prescribed on 14th October 2015 and subsequently have been taking it twice a day and as far as I am aware I do not feel any different.

I went for the first of 3 monthly blood tests yesterday where the nurse stated that this particular drug is a high risk one!!

The consultant subscribed it to me and I have the utmost confidence in her so will continue to take until otherwise told.

[John14]

Hello Christoff,

Yes I am since about April 2015, I have not noticed any side effects, I've had two blood tests and my Liver readings were a bit higher than normal at first but have improved. I think it's a no brainer really Riluzole is shown to have a beneficial effect although only marginal. How are you getting on? I've noticed that since you got back from Turkey you've not posted anything very much I guess that means you've been busy doing other things.

John

[Christoff]

Hey John

Yes back at work full time so everything is really hectic not enough hours in the day really as one just blends into the other sometimes. It will be Xmas before we know it!!

[mags55]

Hi Christof
I have taken rilizole since diagnosed in June this year.
I feel no,different must it's supposed to slow progression by around three months.
To me, I think if everyone of us are different, how would they know? But I take it anyway.
Mags x

[Terry]

Hi Christof;

Don't worry too much, just make sure the liver and kidney function bloods are OK. Like a few other here, I've taken them for six years.

Love Terry

[Dude]

Hi Christoff I have take Riluziole since diagnosis in 08 and because I never came off it I had no benchmark to work from. I gave up taking Riluzole 6 weeks ago and have noticed I don't nap as much. Nobody knows how long it extends life by but would still reccomend new members taking it and then form their own opinion in due course. Dude.

[kevin]

just a bit of nothing . When i was on the drug trial there was lots of detail of how the drug would work if it was sucessfull . i asked how dose riluzole work . suprising answer not how we thought and we dont know

[JAN Q]

Hi ,I was prescribed rilozole 3 months ago too and have not noticed any improvement, but was told that it may only add few months to your life but not make you feel better. I went ahead with it anyway and two liver tests showed ok ,but this last couple weeks I have been feeling a little sickly and noticed change in bowel habits like tummy upset. Has anyone else had any side effects. X JAN Q.

[Dude]

Hi Jan Nobody knows what it adds to your life. I believe it is worth taking. I suffered no side effects over 7 years. Dude x

[JAN Q]

Thanks Dude, I am just a bit down at moment, beginning to deteriorate a lot with my mobility,weakness and speech,it's all happening together it seems, then started to feel this sickly feeling and tummy upset just don't seem to be coping as well as I have been. X JAN Q.

[Dude]

Hi Jan I too, have been at my lowest ebb since diagnosis, had problems with flu & pneumonia jabs and meds change and family and work. It's just a phase, be ok tomorrow. Dude x

[Candle]

Jan. Mum had a similar spell to what you describe - most meds seemed to disagree with her. On the brighter side they did all pass. Fingers crossed for you that this spell passes quickly and you're feeling better soon.

[JAN Q]

Hi Candle, thanks for your reply, I hope that it is not the drugs because as I am deteriorating rapidly I was hoping that they would slow it down a little. I have lost the ability to walk now and my speech is deteriorating fast along with dexterity in my hands, I am still trying to cope on my own though with just a little domestic help twice a week. Was very down over weekend shouldn't be I know but actually feeling bit sorry for myself, picked up a bit today as I slept better, that always seems to help, nice of you to reply it certainly helps to chat. Kindest regards Jan Q. X

[Terry]

Hi Jan;

Sleep is so important and makes us all feel so much better but is not easy for us to get.

Most medications affect me, any relaxants, antibiotics and pain killers seem to make my mobility worst. I do still like always take riluzole.

Do you get advice from anyone like a hospice etc. You might be able to get more help.

Love Terry

[JAN Q]

Hi Terry, I will carry on with the rilozole ,only other drug I take is carbocistein to help with the mucus, still trying to get the dose right with that. I do have contact with my local hospice, am having visit today from nurse and then they have arranged for me to visit the day centre there on Wednesday, all new to me but feel the time is right now. Thanks for chat it all helps , X love Jan Q.