Riluzole .poll

[JamesMcC]

A lot of pals are looking here for info and opinions on riluzole.

When did you start it after diagnosed?
How long on it?
How long on it until you needed trach support?
Are you still on it?
Side effects.

All your opinions are welcome so asto help all pals in their decision making.Please give a short ans to each.one liners.
thx
James

 

[joelc]

Don't take it, never did. The list of potential side effects are scary and I did not have $950.00 a month to pay for it. I know a lot of PALS do take it without side effects, but I know a few PALS who quit because of the side effects.

 

[JamesMcC]

THX JOEL
on it..........4months
stopped for 2 weeks..felt more energy
on again..........2 months and now im quitting today.
average 250$/mt
If it helps ,it helps very early stages then after 2yrs youre wasting your $$$$$$$$$$$

JAMES
James

 

[BethU]

Started one month after diagnosed, 2+ years after onset
Side effects: intense twitching and shaking, especially left arm
Discontinued after one month.


(James ... don't know if you're wasting $$ after 2 years, Experts say it extends survival in middle stages.)

 

[hopingforcure]

Never took it, too many side effects for me.

 

[JamesMcC]

Well ...on it ,off it...the trial speaks...no difference in the end after 18mths

Among the patients in whom treatment failed during the study (tracheostomy or death) there was a difference between the treatment groups in median survival of approximately 60 days. There was no statistically significant difference in mortality at the end of the study.

 

[brooksea]

husband never has taken, not worth it in more than one way.

 

[GlenBrittle]

Hey James,

Symptoms started Jul 2007
Diagnosed Oct 2008
Riluzole started Dec 2008
Lithium started 2 weeks later

Other than being a little more tired , I don't think I have had any other side effects.
The lithium seems to keep me on an even keel. Its tough to stay positive 100% of the time.

Are they working ? I know I woke up this morning and went to work. Just like the day before. Seeing that there have been short timers checking out lately, I will keep taking it until I find a real good reason to stop.

The cost is covered by my insurance. 632$ / mth .

Maybe the only thing I shouldn't do is take the pills and then hop into a hot tub. Nothing seems to matter after that , the house could have burned down around me . Once was enough .

Am I progressing ? Sadly YES. Still walking and talking , but the left had is getting really weak, and I have to slow my speaking down sometimes to get the words out.

Does it bother me that some start and stop the drugs. Kind of , but it their business , to each their own. I hope we are all making the right decisions. Who can tell.

 

[Mahealani]

Aloha:

Symptoms started 1/08
Dx was 10/08
Started Rilutek (thats what its called on my prescription) 12/08 50mg 2x a day
no real side effects yet - maybe a little more tired
still progressing faster than i hoped - just starting speech issues (only I really notice)
right hand/arm gone - left weak, barely walking
cost is $20 a month - my insurance covers the rest

dont know if its helping or working? doesn't seem like it

Mahea

 

[beverly rees]

My husband was diagnosed October 2008. He started taking 50mg twice a day in March. Took it for five days and was significantly weaker. He discontinued it and tried a month later to cut the dosage down to just 50mg a day. The next day he again was significantly weaker so we decided it is not for him. Bev

 

[hopingforthebest]

Rilutek

My husband started the Rilutek in November and was sick, lost quick 15 pounds
in 3 months, gagged when eating, got weaker.
Stopped the Rilutek in February.
Our rx plan covered it with a $30 copay.
We have no intentions of starting again. When we read the results of the double blind study it said prolongs the life of the ALS patient by 5 months. What!

Time to find a cure and the time is now! Enough of this nonsense swallowing a pill!

Praying for a cure day after day.


Patty

 

[SteveS]

Depending how you intend to fight the disease (assisted or let nature basically take it's course) 5 months can be a long time. Long enough to accomplish things you never had time or treated as a priority previously. Wife has been on it for about 5 months. No real side effects. Has it been helping?...who knows. Has it been hurting?...again who knows. We don't know what the rate of progression would be like without it other than the year prior to her diagnosis and things seem to be moving along at same rate, possibly a bit slower but I can't tell. Between our 2 separate extended benefit plans through employers we now pay nothing for her prescription(s) so we both pretty much agree to stay on it until she decides otherwise.

 

[mango]

I'm really glad someone started this thread. I wanted to do this today but held back.
I started the Rilutek AND Lithium about a week ago. I know that's not very long. I started taking them both because the progression of my disease had taken me to a new level of desperation.
I've felt really crappy this last week. No acute side effects, but lots of less severe ones. Of course I don't know which drug is causing the discomfort, or if it's both, but I'm going to hold off on the Lithium for a few days and see if I can get back to feeling good.

I took special interest in Glen's post as he's taking both drugs also, and his case seems close to mine, maybe a little less aggressive. I just recently went on leave from work. It just was taking too much out of me.

as for the list:

When did you start it after diagnosed? - four months, but I knew it a month earlier
How long on it? - only a week or so
How long on it until you needed trach support? - n/a
Are you still on it? - yes, for now
Side effects. - yes, but don't know if it's the Rilutek or Lithium. I feel more tired, twitching harder to control, had some headaches, nausea, blurred vision, stomach upset etc.

 

[GlenBrittle]

Mango ,

I staged my start of the two drugs by two weeks.
get your GP to set you up with lots of blood tests for :
Liver - Rilutek can have an affect on it ... to be monitored closely
Lithium - needs to be monitored to achieved a certain level in the blood.

I am sorry for those that have the side-effects other than tired.

Ahhh .. mr. sandman is back ... off to bed again.

Glen

 

[BarryG]

When did you start it after diagnosed?
Symptoms (slurred speech) in July of 2007, diagnosed in January of 2008, Rilutek one month later.

How long on it?
Most of the last 1.5 years

How long on it until you needed trach support?
Not there yet

Are you still on it?
Yes

Side effects.
None, other than the cost of the extra medical insurance and co-pay amount (about $90/mo combined). When I was taking it by mouth I was putting it on my tongue and then washing it down with water. Bad idea, it was killing my taste and causing everything to taste bad. That caused me to cut back to one pill per day but once I started to put it into yogurt it was ok, now I'm back on twice a day, crushed and put in my tube. There have been occasions where I have missed a few days and to be honest I have not noticed and difference in the way I feel or in my symptoms.