Rilutek Prolongs Survival of ALS Patients in Later Stages, Study Shows

Rilutek Prolongs Survival of ALS Patients in Later Stages, Study Shows

Rilutek (riluzole) extends survival of patients with amyotrophic lateral sclerosis (ALS) who are at  advanced stages of the disease, rather than preventing disease progression is early stages.

Those findings were reported by a team led by King’s College London researchers and published in The Lancet Neurology. The study was titled “Stage at which riluzole treatment prolongs survival in patients with amyotrophic lateral sclerosis: a retrospective analysis of data from a dose-ranging study.”

Rilutek was the first ALS drug to be approved by the U.S. Food and Drug Administration. Although it is not fully understood how it works, several clinical studies have demonstrated its potential to extend patients’ survival.

However, these same studies have failed to clarify the affects of Rilutek at different stages of the disease and which patients may benefit the most from this treatment.

In the recent study, researchers reviewed the clinical records of 959 ALS patients who participated in the initial dose-ranging study of Rilutek. During this trial patients were selected randomly to receive 50 mg, 100 mg, or 200 mg per day of Rilutek, or daily placebo.

When the trial was conducted, between December 1992 and December 1994, disease staging scales were not yet clear. Patients were classified based on whether they had had a tracheostomy (a surgically made direct airway connection in the neck).

To better categorize patients, the team re-analyzed their clinical records and applied the King’s clinical staging system. This scoring system ranges from range from 1 (early disease) to 4 (late disease), with stage 5 being death. It takes into account different motor impairments that characterized ALS progression, as well as late stage nutritional and respiratory failure.

Based on the estimated staging, 355 patients were enrolled in the study at ALS stage 2, 451 at stage 3, and 153 at stage 4.

Analysis revealed that Rilutek treatment did not significantly change disease progression rates compared to placebo in patients at stages 2 and 3.

In contrast, patients at stage 4 treated with the drug experienced extended survival compared to those treated with placebo. The more significant effect was seen in the group treated with 100 mg per day of Rilutek, who experienced a reduction of 45 percent in the risk of stage transitioning, compared to placebo.

Next, the researchers performed a similar analysis, but with clinical data collected during the LiCALS trial (2008-006891-31). This study included 217 ALS patients who were assigned randomly to receive lithium or placebo. The analysis revealed that lithium treatment did not change the time patients remained in each disease stage compared to placebo. This demonstrated that the effect seen in the dose-ranging study was specific of Rilutek’s effect and not a statistical or analysis-driven consequence.

The researchers believe these results show that Rilutek “acts by prolonging stage 4 ALS rather than by slowing the entire disease course or prolonging intermediate stages.”

Such analysis approach “should be used in future clinical trials of ALS or other neurodegenerative diseases,” to better recognize treatment benefits and “to allow a full discussion of effects when counseling patients about treatment,” they added.


  1. Charlie says:

    More confusion for us all. More frustration for us all.

    The three neurologists I have talked to were all adamant that Rilutek/Riluzole is completely ineffective if commenced more than 15 months after symptom onset.

    What an utter shambles. Researchers simply will not concentrate on making the big strides in progress rather than shuffling these Titanic deckchairs around.

    We are now almost a third of the way into another year and there has been no progress. The Ice Bucket money has produced nothing. What a mess.

    • stuart says:

      All Rilutek does is extend life, not even that well, it doesn’t improve quality of life at all, probably makes it worse and can damage your liver, you got to ask yourself what’s the point in that.
      With regards to the ice bucket money it did improve discovery in understanding the genes involved in ALS and mechanisms but still very little is known about the disease and how to actually tackle it.
      Radicava was released with the money but I think it was just another ploy to make more money off desperate people on a drug that is again pretty ineffective. They even have admitted it does very little but yet is exorbitant in price.

      • Charlie says:

        ‘… ice bucket money it did improve discovery in understanding the genes involved in ALS…’

        ‘fraid not. It did not improve understanding but, at best, the funded research simply ‘discovered’ the problem was far bigger than previously thought.
        The problem is… no-one knows why these increasing numbers of genes are affected by ALS.
        No-one knows if they are a cause or a symptom.

  2. Charlie says:

    Now it looks like the Canucks’ have come to the top of the pile to be shafted with Radicava costs.Whilst Canada has taxpayer-funded health care you can bet your last ‘loonie’ that the efficacy data will exclude most pALS from receiving it. Only the most recently-diagnosed will get this gloop. And then, no-one will be able to say if the recipients’ perceived benefit is a result of slow progression or the magic gloop. And that’s the way MT Pharma would like it to stay.
    Gene editing shows more promise than does cooling down excitable neurons with infusions.

  3. Charlie says:

    I think I read that we all have over 20,000 genes and 45-50 have been identified as going wonky alongside ALS.
    Thing is… how many more are there not yet discovered that are crocked by ALS…… or cause ALS ?
    And I don’t see many researchers looking for them. They crop up at about three or four a year. So, quite a way to go yet.

  4. Julio Pina says:

    My first diagnosing neurologist put me on riluzol even before he had a definite diagnosis. This is back in early 2016. That man is a tyrant who refused to converse with me on research I was coming up with. Now I see a more human neurologist who continues me on riluzol saying there is nothing else available for als at this time. At my last appointment in February, my liver checked out okay so he said to carry on taking it. I have no idea if the progression of this damnable disease has been halted or not. But I figure it’s much like a philosopher once said when the question on the existence of God came up : better to wage that there is rather than there is not. I rather keep taking riluzol even though I don’t know whether it will do any good.

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