Long-Term Use of Rilutek Can Improve ALS Patients’ Survival, Italian Study Finds

Long-Term Use of Rilutek Can Improve ALS Patients’ Survival, Italian Study Finds

ALS patients who took Rilutek (riluzole) for at least three-fourths of the time they had their disease survived longer than those who took it less, an Italian study reports.

Rilutek is the first ALS treatment to obtain U.S. Food and Drug Administration approval. Scientists are still not sure how it works, but clinical trials showed it significantly improved patients’ survival. Studies have suggested it works better in some patients than others, however.

Researchers decided to look at the survival patterns of 681 ALS patients in Italy’s Emilia Romagna Region who took Rilutek.

Their study, published in the Journal of Neurology, was titled “Riluzole and other prognostic factors in ALS: a population-based registry study in Italy.

The team obtained patient information from the Emilia Romagna Registry for ALS. They focused on cases diagnosed between 2009, when the registry was started, and 2014.

Five hundred seventy-three of the 681 patients — or 84 percent — had taken Rilutek.

The drug failed to significantly improve the patients’ survival as a whole, researchers discovered. But two groups within the population did survive longer — those who began taking Rilutek early in their disease and those who took it for a long time.

Patients who took it at least three-fourths of the time they had their disease “had a median survival of 29 months, compared to 18 months in patients” who took it less, the researchers wrote.

Several factors besides how long patients took Rilutek could affect patients’ survival, the team said. These included the age when patients’ symptoms appeared, how much time went by before they were properly diagnosed, whether they had lost weight when they were diagnosed, whether or not they had dementia, whether they needed a ventilation device, and whether they needed to be feed through a tube.

When researchers accounted for these other elements, they concluded that “independently from [these] other prognostic factors, patients who received riluzole [Rilutek] for a longer period of time survived longer.”

They said “further population-based studies are needed to verify if long-term use of riluzole [Rilutek] prolongs survival.”


  1. Esengül says:

    Biz rilutek kollanmadan yurumemizde konusmamizda daha iyiydi onu kollandiktan 2ay gibi bir sürede konusma tamamen anlasilmaz hale geldi yurumede bir problem yokken ayaklarda gitti

  2. John Tallis says:

    Riluzole I was formally diagnosed with MND ALS in May 2014 I have taken the tablet twice a day since. I cannot walk and talk now but still’manage eat minced up food and swallow alright and have fitted PEG but don’t yet need to use it. Use a hoist in and out of bed and into chair. Still managing to do bits especially now in school half term got the grandkids around they do good job looking after me.

  3. Adele says:

    If the one of ALS identical twins is on Rilutek and the other on placebo,the twin on Rilutek survives the twin on placebo by a few months, I will believe in Rilutek.
    After 20 years in use it is clear that Rilutek was given by desperate doctors to desperate patients because it is nothing else on the market. Or maybe it is?

  4. Dagmar Munn says:

    Rilutek seems to always get a bad rap but it hasn’t been a problem for me. I too was initially worried about taking Rilutek, but did begin within one month of my diagnosis in 2010. Eight years later, I’m still taking it — I still walk with a rollator, no PEG, no breathing issues but… still keeping my fingers crossed!

  5. Charlie says:

    Every neurologist I have talked to has said the same thing, ie you have to start taking this tablet well within a year of symptom-onset for any effect to be felt or imagined. Not diagnosis, symptom onset.
    So it depends on how quickly the pALS is diagnosed. Otherwise you might as well chew carpet dust.
    The makers of Rilutek will be delighted with this study (did they fund it?) as it appears to show that after 20 years of existence and vague statistical evidence of an extra two months longevity, it might now give pALS an extra year of longevity. Why has the drug suddenly improved its effectiveness?
    The timing on this study is also interesting, as market-competitor Radicava is seeing some increased take-up by very rich pALS, and it too seems to offer the extra year of longevity.
    Coincidence….. I think probably not.
    Business is business whether we live or fall.

    Radicava, like Rilutek, must be commenced within a year of symptom- onset to have any perceived effect. The manufacturers shy away from addressing the question of whether quick-acting consumers of either or both drugs are in any event slow-progressors. That would be a financial mine-field. Expect no study for that aspect.

    Both drugs are fantastic money-spinners for stock-holders whilst doing little to alleviate symptoms for the majority of pALS. Bravo for the minority who experience tangible benefit.

    I know of no neurologist,either, who sings any praises for either drug. Realism forbids them to eulogise. For many pALS both drugs are a waste of a perfectly useful empty space, and many doctors have Rx-ed Rilutek as a placebo to help those in despair.

    One question we must ask ourselves, I feel, is why the manufacturers have not further studied the drug to find out why is has no effect on those whose symptoms are established. In my humble opinion it is because they do not wish to draw attention to Rilutek’s profound short-comings, which such a study would surely do.

    I easily tire of the multitude of researchers’ claims that this is such an exciting time for ALS research. It isn’t exciting, it is the age of hard yards of which many of us will not witness the fruits.

    The desperation of the research community is exemplified by the ‘excitement’ of a Phase 2 trial of Pimozide sometime this year in the USA and Canada. It is an old drug originally used to pacify profoundly psychotic patients and which can have horrifying side-effects.
    If this is one of the ‘top-ten’ possibilities for treatment then I am very much afraid for us.
    ALS Research in 2018 remains sprinkler-hose in its approach because no effective treatments can hope to be settled on when the cause of ALS remains such a satanic mystery. Our own main hope in the short term is a miraculous stroke of luck in the labs.

    • Celeste Lamosse says:

      I must say I totally agree with all the comments above. Radicava is another example of Big Pharma, producing a drug with very little effect that costs a mint to sell to desperate patients.

  6. Massimo Bianchi says:

    Hanno fatto la grande SCOPERTA! Comunque 29 mesi di sopravvivenza mediana dall’insorgenza della malattia è un risultato PESSIMO! Ci vuole ben altro! Dai miei calcoli, con l’edaravone, il masitinib, il glialia il nicetile e l’acido tauroursodesossicolico la sopravvivenza media (ed in pratica anche quella mediana, corrispondente alla metà dei pazienti ancora in vita) può essere aumentata, al netto del riluzolo, di un fattore quasi pari a 2! L’allungamento medio della vita è del 37% per il Radicut, 25% Masitinib, 15% per il Nicetile e l’acido tauroursodesossicolico. Se le azioni sono INDIPENDENTI basta moltiplicare 1,37 x 1,25 x 1,15 x 1,15 e dividere due volte per 1,09 (effetto del Riluzolo, che non può essere contato più di una volta!) e si ottiene il risultato! Circa 1,9, cioè il DOPPIO: da 29 a 55 mesi! 😉

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