Rilutek reaction

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beverly rees

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My husband just started taking rilutek. He only took it two days and discontinued it because of increased weakness. His arms were very noticeably weakened and very fatigued. Anyone else have such an immediate reaction in just a short time of taking this drug?
 

agneta526

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rilutek reaction

I tried it for 3 days and noticed extreme weakness an fatigue plus stomach upset. I stopped after 4 days. I didn't even take the full dosage.
 

BethU

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I took it longer ... three+ weeks ... but found that I was developing very strong twitches, in my left arm particularly, which had not been there before. I had had very mild, almost unnoticeable twitches in my left hand, but these were jerks of my whole arm. When I stopped the Rilutek, the jerking stopped.
 

Jennifer51

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Just goes to show, it made my twitches much better....I would not want to be without it.
 

BarryG

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For me there was no change in anything on or off Rilutek except for it affected my taste. I've fixed that by taking it with pudding or yogurt. I haven't had noticeable twitching anyway.
 

jimmybob

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clinical trials with riluzole showed an extension of 3 months survival in half the patients tested. I took it for 1 month, and i felt better after i quit taking it. Besides, the outcomes don't justify the cost, in my opinion.
 

Valya

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My son has been taking Rilutek for approx 2 months now. He had an upset stomach the first day he started taking it, but this was after lunch at a spicy Mongolian BBQ, lol. He's a bit more sleepy also. His dosage has been doubled to 200mg per day. Other than the one upset stomach incident and some sleepiness, he's had no other side effects.

I wonder also, whether Rilutek is of any real benefit.
 

Jennifer51

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jimmebob...thats where I am lucky with socialised medicine, it does not cost me anything..not even the fee for the script..I have managed to get an exemption certificate...so all medication is free. My second opinion neuro, recognised worldwide, told me that there was a 20% possible increase in life expectancy with riluzole,,,,pointing out that if you were diagnosed early and took it straight away, you potentially got more life than if you had already had it some years and were further down the line. For my sanity I go along with this though others may not agree.
 

rose

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Jennifer, I was also told the earlier it was taken after diagnosed the more effective they believe it is. Unfortunately (maybe?) I've stopped and started it twice, At first it made me weak, I got past that and it was ok, but started having so many gastro problems I was blaming it on the Rilutek. I even thought that it was maybe to blame for my loss of taste, but it seems not.

Now, I'm currently without insuracne for prescription coverage, so again I'm not taking it. I've got a couple of months worth sitting in the medicine cabinet, but I don't want to take it if I'm not going to keep it up this time.

Even if a person was going with the assumption that it would only afford them less than 6 additional months, who knows but what those months would really matter? What if there was a grandchild expected, etc?

So, I think if the person does not experience too many unpleasant side effects, and they can afford it, it is completely worth taking.
 

BarryG

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Rose, I cannot agree with you more. If Rilutek gives me one day more and doesn't give me quality of life issues while I'm here I'm on it. It costs me about $60 per month with my insurance ($600 without) so the cost is doable.
 

brendapals

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Yeah, I'm on the same thinking as rose, mine costs me $30 per month and I have had no side effects- that I know of anyway, still most days I forget to take it at night.

Maybe I really need a memory pill?:p:p
 

Jennifer51

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I bought one of those simple little weekly pill boxes and put my 2 pills in it for each day of the week so I can make sure that I have taken it.
As for extra life expectancy..maybe I am kidding myself, but if that small amount of time means I just MIGHT be around IF a cure is found. it is enough to keep me going just. I would hate to pop me clogs and then my family to be distressed that I had missed a possible cure by a short time. I hate this disease and dont want to live with it BUT I must have hope that something is around the corner and IF Rilutek will get me there so be it.
 
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Rhonda started on Rilutek the day after her diagnosed. Unfortunately, the progression has been extremely fast! I have wondered just what the Rilutek was supposed to do and what might have happened without it. I have also wondered if it might have sped things up, but figure the doctor knows what he is doing. For the time being she is continuing with the Rilutek.

Dennis
 

rose

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Dennis, I'm sorry to read that your wife's progression continues to be fast. Rilutek is not to slow progression but rather to extend life. I know it sounds like a contradiction, but that is what they tell me, neither is it for alleviating symptoms, although some on here, such as Jennifer have found that it does help with certain aspects of how she feels.

It seems like PALS do plateau in many cases, so perhaps Rhonda will not continue at the same rate she is experiencing right now.

good luck to both!
 

jimmybob

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jimmebob...thats where I am lucky with socialised medicine, it does not cost me anything..not even the fee for the script..I have managed to get an exemption certificate...so all medication is free. My second opinion neuro, recognised worldwide, told me that there was a 20% possible increase in life expectancy with riluzole,,,,pointing out that if you were diagnosed early and took it straight away, you potentially got more life than if you had already had it some years and were further down the line. For my sanity I go along with this though others may not agree.


jennifer,

cost is not an issue with me, it's the efficacy of riluzole. i've read the clical trail data and i was not impressed. as a former drug rep for 10 years, and after discussing the data with my neurologist (who i called on for 8 years, developed a friendship with, and he diagnosed me) i decided not to continue that line of pharmacotherapy. i am sure some with ALS get a benefit, and i am not discouraging their use of riluzole. the progression and effects of ALS is different in each individual affliced. i decided on modified diet limiting glutins, taking supplements (vitamin E, CO-Q10, creatine), and a positive attitude.
 
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