trouble adjusting to riluzole?

How do you feel about Rilutek?

  • Rilutek (Riluzole) helps PAL

    Votes: 3 17.6%
  • Rilutek doesn't seem to make a difference

    Votes: 8 47.1%
  • Rilutek has made PAL feel worse

    Votes: 6 35.3%

  • Total voters
    17
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rose

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... I tried doing a search on our forum site, but finally just decided to ask the question, even though I'm sure its been asked and answered many times. I don't know if my added weakness is a side effect of the medication, and if so, how long is a reasonable time to get my body to get used to it? Has anyone else experienced weakness as a side effect?

I delayed starting to take it for a while, because of waiting for blood test results, but then after I began having many more problems with the legs I decided to start it. So, at least I know not to attribute Riluzole as the cause the increasing fasciculations, as they'd already set in, but I've not felt well at all since beginning it.

Who hates it, and who think it helps?

thanks,and take care everyone :)
 

BethU

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Put me down for "hates it." Did not quite finish my first prescription, as it appeared to be making my symptoms much worse.

I do not know if Rilutek was "speeding up" the progression or not, but I found the effects intolerable.

Specifically, I have had gentle twitches down my left arm for some time ... I don't feel them at all, but can see them clearly. They are constant, all around and up and down my arm, and I can also see the atrophy and feel the weakness increasing in that arm and hand.

Taking Rilutek for 3+ weeks increased the force/violence of those twitches to the point where my whole arm was shaking and jerking, and my left hand had a constrant tremor like Parkinson's.

I stopped the Rilutek, and within a day, the twitches were back to "normal," i.e., gentle ones that I could not feel. I had already purchased a refill on the prescription. I'll be going back to UCLA for my second clinic appt next week, and plan to ask the neuro if this was a normal side effect, and if it relates to the progression of the disease. (i.e., do stronger twitches mean the disease is progressing faster?) And also, is this a side effect that disappears after the body adjusts to it.

Interesting question! Will be interesting to hear others' experiences.
BethU
 

Jennifer51

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Put me down for "hates it." Did not quite finish my first prescription, as it appeared to be making my symptoms much worse.

I do not know if Rilutek was "speeding up" the progression or not, but I found the effects intolerable.

Specifically, I have had gentle twitches down my left arm for some time ... I don't feel them at all, but can see them clearly. They are constant, all around and up and down my arm, and I can also see the atrophy and feel the weakness increasing in that arm and hand.

Taking Rilutek for 3+ weeks increased the force/violence of those twitches to the point where my whole arm was shaking and jerking, and my left hand had a constrant tremor like Parkinson's.

I stopped the Rilutek, and within a day, the twitches were back to "normal," i.e., gentle ones that I could not feel. I had already purchased a refill on the prescription. I'll be going back to UCLA for my second clinic appt next week, and plan to ask the neuro if this was a normal side effect, and if it relates to the progression of the disease. (i.e., do stronger twitches mean the disease is progressing faster?) And also, is this a side effect that disappears after the body adjusts to it.

Interesting question! Will be interesting to hear others' experiences.
BethU

I have bulbar onset....DX end of march this year...I started taking rilutek in early May...I must say, maybe I am one of the lucky ones...my twitches were almost unbearable before I started the pills and I noticed a reduction in the violence of the twitches with hours of taking the first pill, and the twitching gradually reduced to a more acceptable level within about 2 weeks...still too much twitching, but almost liveable with..if any of this rubbish is liveable with! I am VERY happy with Rilutek.....my one complaint is that the pharmasist and indeed the paper in with the pills, did not say to take the pill on an empty stomach...which I read on this forum, and checked on the rilutek website..so now I take on an empty stomoch...anything in th ehope to make it work to its maximum.
jennifer51
 

hopingforthebest

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Rilutek

Hi Rose

Good question! In my husband's case, he got very very sick on the Rilutek. He lost 15 pounds in 3 months. With the weight loss, it seemed to make his other neuro symptoms worsen. His doctor stopped the meds. Withiin one month he felt better, of course ate again, and symptoms have been progressing slower.

I don't think Rilutek is the answer and praying for one that surely will be!

Patty :)
 

rose

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Thank you everyone for your responses, The poll results are interesting to say the least! I didn't vote in it because I've been taking it for such a short while. Hopefully we'll get more feedback on here. :)
 

PDaddy

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I've already voted, my Riluzole (and Lithium too for that matter) has not made me 'better' or worse with zero side effects. My fasciculations haven't changed in 9 months, I've been on R&L since April.
 

Zouz

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Rilutek ( yes/no?)

Hello. Was diagnosed late Setpemebr but started Rilutek only 12 days ago. Once I did, I could feel some drop in energy. Five days ago I raised the dose to two pills a day (per instructions) and the next morning I could barely get out of bed and as if something sucked all my energy and left nauseated and w/o appetite. Stayed on this for three days and nothing changed, just kept feeling worse. Emailed my Doc Saturday and Sunday she replied and asked me to drop back to one pill per day. Felt a bit better the next day (yesterday). Woke up this mornig even better and took my Pill 32 hours after the last one. Within 1/2 hour I got sudden fatigue and nausea again similar to what I had before. Just emailed my doctor that if the quality of life has to drop like this when I take it, I prefer the keep up the higher quality in the interim and sacrifice the little extra time that Rilutek may give me. I am waiting to hear from my Doc but thought I'd throw this out here for feedback in the meantime.

Am I missing something here that Rilutek may also offer better quality of life (sometime later? and if so, what quality?) in addition to extending time?

Would appreciate any insights anyone may have to share. Thank you all very much.
 

Jennifer51

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I posted a few months ago to say I was VERY happy with riluzole and did notice an improvement within hours of first taking it. I must be one of the lucky ones...I am STILL extremely happy with it for the same reasons, and now I find that to have any chance of getting on the UK trial for lithium, you MUST be taking it...I am waiting to here if I might get on the new UK trial.
jennifer51
 

Zouz

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Thanks Jennifer. I am pleased to see that it has worked well for you and others. It could be that my metabolism does not agree with it. Kind of what other medications do with different people. I have found a good cognac as a night cap great for facsiculations too :)
 

BethU

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Hi, Zouz ... I've never heard about it improving the quality of life ... just possibly extending it by two to six months, according to statistics. For those who can tolerate it, or even feel better taking it, it's worth it. But I was one, like you, who didn't react well at all.
 

Zouz

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PALS
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Thanks Bethu. Great feedback and reassuring to know there are those who stopped taking it when it did not offer them any added quality; a drop instead is what it did. I shall share what my Doc tells me once I have her reply. Thanks again, best wishes and I hope you are coping well.
 

paula-jane

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My mum took Rilutek from diagnosis to death (about one year) She tolerated it very well. We were told that we would not "see" a difference and that she would not actually "feel" any"extension" to her life (As ALS only goes in one direction!). Whatever it did.... it helped her to feel that she was doing everything in her power to fight ALS. She became palliative in August 2007 and lived until March 2008... so who knows! I'm not certain it helped with her spasms or twitches... she took Baclofen for those and that really did help control those signs. This disease is different for each person.

Paula
 

Zouz

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I promised to come back with my Doc's reply. She did this morning and asked me to stop Rilutek. I just did missing my dose today. Shall keep you posted on my progress. Thank you all for your comments.
 

Altair

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Riletuk

My wife has been taking the medicine for the past several months. We cannot report anything positive at this point.

Her strength level has detoriated significantly. We don't know if it connected to to her use of Rilutek.
 

[email protected]

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My mom has also been taking it for the past 2 weeks and she is complaining of feeling weaker..It may be to early to decide if its helping her?
Mary
 
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