ALS doesn't announce itself with a loud alarm. It creeps in-maybe a stumble on the stairs, a hand that won’t grip a coffee cup, or slurred words that don’t quite match what you meant to say. By the time most people get a diagnosis, the damage is already spreading. Amyotrophic Lateral Sclerosis, or ALS, is a relentless disease that kills the nerve cells controlling movement. These neurons die one by one, leaving the body trapped inside a slowly failing shell. There’s no cure. But for nearly 30 years, one drug has been the only thing offering even a small chance to slow it down: riluzole.
How ALS Destroys Movement
ALS attacks two types of motor neurons: those in the brain (upper) and those in the spine (lower). When they die, signals from your brain stop reaching your muscles. At first, it’s subtle-a foot dragging, fingers fumbling with buttons. Then comes weakness in the arms, trouble swallowing, difficulty speaking. Eventually, breathing becomes a battle. Most people live 3 to 5 years after symptoms begin. Some survive longer; a few, rare cases, live decades. But the path is always downhill.
What’s worse, no one fully knows why it starts. About 10% of cases are inherited, linked to genes like SOD1 or C9orf72. The other 90% happen without warning, with no clear cause. What we do know is that glutamate, a chemical messenger in the brain, builds up where it shouldn’t. Too much glutamate overstimulates nerve cells until they burn out. This is called excitotoxicity. It’s like turning up the volume on a speaker until it explodes. That’s what happens to motor neurons in ALS.
Riluzole: The First and Still Key Drug
In 1995, after decades of failed experiments, riluzole became the first drug ever approved to treat ALS. Developed by Rhône-Poulenc Rorer (now Sanofi), it wasn’t a miracle. It didn’t reverse damage. It didn’t stop progression. But it did something no other drug had: it gave people a few extra months. In clinical trials, patients on riluzole lived about 2 to 3 months longer than those on placebo. That might sound small, but in a disease where every day counts, it mattered.
Riluzole works by calming down the glutamate storm. It doesn’t block glutamate completely-that would shut down the brain. Instead, it gently reduces how much glutamate is released and blocks some of its receptors. It also helps by turning off sodium channels on nerve endings, which reduces overactivity. Think of it like a dimmer switch on a flickering light. It doesn’t turn off the power, but it makes the chaos less violent.
It comes in three forms: tablets (Rilutek), liquid suspension (Tiglutik), and a thin film that dissolves on the tongue (Exservan). The standard dose is 50 mg twice a day-morning and night. It’s absorbed at about 60% efficiency, and levels peak in the body within an hour and a half. Because it clears out in 7 to 15 hours, you need two doses to keep it working.
How Effective Is It Really?
The data is messy. In the original 1996 Lancet trial with nearly 1,000 patients, riluzole cut the risk of death or needing a breathing tube by up to 39% at 18 months. That’s a big win in statistical terms. But when you look at real-world use, the picture blurs. Some studies show survival gains of 6 to 19 months. Others show no difference at all.
Why the gap? Real patients aren’t perfect trial subjects. They’re older. They have other health problems. They might skip doses. Their disease progresses at different speeds. One patient might have slow arm weakness; another might lose speech and swallowing fast. Riluzole doesn’t work the same for everyone.
Still, major medical groups stand by it. The American Academy of Neurology gives it a Level A recommendation-the strongest possible-based on solid evidence. Experts like Dr. Hiroshi Mitsumoto at Columbia call it a “meaningful therapeutic advance.” Even if it only buys you a few months, those months can mean seeing a grandchild graduate, finishing a book, or saying goodbye properly.
The Side Effects That Make People Quit
Riluzole isn’t easy to take. About 1 in 4 people get nausea. One in 7 get diarrhea. Fatigue hits 1 in 5. And then there’s the liver.
Up to 12% of users see their liver enzymes rise. That doesn’t mean liver damage-but it’s a warning. Doctors require blood tests before starting riluzole and then every month for the first three months. If enzymes climb too high, you stop. One Reddit user wrote: “After 9 months, my liver was 3x normal. I had to quit. Frustrating when the only drug that might help damages your liver.”
That’s why only about half of patients are still on riluzole after two years. Many drop out because of side effects. Others stop because they feel nothing. But many who stay say it’s worth it. “Nausea was brutal the first 3 months,” shared another user. “Now it’s manageable. My neurologist says my progression is slower than average. I’d take any chance for more time.”
Who Shouldn’t Take It?
Riluzole isn’t for everyone. If you have moderate to severe liver disease, you shouldn’t take it. Your body can’t clear it properly, and levels build up dangerously. Alcohol use increases this risk too.
Drug interactions matter. Caffeine-coffee, tea, energy drinks-slows down how fast riluzole leaves your body. That can raise side effects. The asthma drug theophylline becomes more toxic when taken with riluzole. Your doctor needs to know every pill you’re taking.
Renal problems? No adjustment needed. Kidneys don’t handle riluzole. It’s the liver’s job. But if your liver is already struggling, riluzole could push it over the edge.
What’s Next for ALS Treatment?
Riluzole was the only game in town for 22 years. Then came edaravone in 2017, a drug that slows functional decline in some patients. In 2023, tofersen (Qalsody) got approved for ALS caused by SOD1 gene mutations-a breakthrough for the 2% of patients with that specific form.
But riluzole still leads in prescriptions. About 80-85% of newly diagnosed patients in the U.S. and Europe start it. Why? Because it’s proven, widely available, and works across all ALS types-not just genetic ones. Tofersen requires a spinal tap and costs over $300,000 a year. Riluzole? A few hundred dollars a month, depending on where you live.
Access is a huge problem. In low- and middle-income countries, only 15-20% of patients can afford it without help. In places like South Africa, India, or Nigeria, many never even get tested because treatment is out of reach.
New versions are trying to make it easier. The thin-film version (Exservan) causes less nausea and is absorbed better. Researchers are testing riluzole combined with sodium phenylbutyrate-a combo that might protect nerves more effectively. Early results are promising.
Living with Riluzole
If you’re starting riluzole, expect a rough first month. Nausea, fatigue, dizziness-they’re common. Take it with food. Stick to a schedule. Set phone alarms. Don’t skip doses. Your doctor will check your liver every month. Keep a symptom journal. Note if you feel stronger, weaker, or just the same.
It’s not a cure. It’s not even a big win. But for many, it’s the only thing standing between them and faster decline. It’s not about living longer in the abstract. It’s about holding your child’s hand a little longer. Hearing your partner’s laugh one more time. Finishing the garden you started.
ALS takes everything. Riluzole doesn’t give it back. But for some, it gives a little more time to say what needs to be said.
Is riluzole a cure for ALS?
No, riluzole is not a cure. It does not stop ALS or reverse damage. It modestly slows disease progression and extends survival by an average of 2 to 3 months. Its value lies in providing extra time, not in halting the disease.
How long does it take for riluzole to start working?
There’s no immediate effect. Riluzole works over months by reducing ongoing nerve damage. Most patients don’t feel better right away. Benefits are measured in slower decline over time, not sudden improvement. Clinical trials show effects become noticeable after 3 to 6 months of consistent use.
Can I take riluzole with other ALS medications?
Yes, but with caution. Riluzole is often used alongside edaravone or non-pharmacological treatments like breathing support and nutrition therapy. However, it interacts with caffeine and theophylline. Always tell your doctor about all medications and supplements you’re taking. Avoid large amounts of coffee or energy drinks while on riluzole.
Why do some people stop taking riluzole?
The most common reasons are side effects: nausea (25%), fatigue (20%), and elevated liver enzymes (12%). About 8% of patients discontinue due to intolerable reactions. Others stop because they don’t perceive any benefit, or because the cost or dosing schedule becomes too difficult to manage long-term.
Is riluzole effective for everyone with ALS?
No. Riluzole’s benefits vary widely. Clinical trials show a group-level survival benefit, but individual responses differ. Some patients experience slower decline; others show no change. It’s not tied to age, gender, or initial symptoms. Doctors recommend it for nearly all patients because the potential benefit outweighs the risks for most, even if the effect isn’t guaranteed.
Are there alternatives to riluzole?
Yes, but they’re not replacements. Edaravone slows functional decline in a subset of patients but doesn’t extend life. Tofersen targets a rare genetic form of ALS (SOD1 mutations) and requires spinal injections. These are used alongside riluzole, not instead of it. For the majority of ALS patients, riluzole remains the first-line treatment because it works across all subtypes and has the longest safety record.
luke young
November 23, 2025 AT 23:39Just wanted to say thanks for writing this. I’ve been watching my uncle go through ALS, and this broke down what riluzole actually does in a way that finally made sense. Not a cure, but a tiny lifeline. That’s more than most diseases give you.
New Yorkers
November 24, 2025 AT 21:26Let me tell you something, folks. Riluzole isn’t medicine-it’s a corporate illusion wrapped in clinical trials and padded with placebo math. They sell you hope like it’s a subscription service. ‘Oh, you’ll live 90 extra days!’ Meanwhile, the real tragedy is that we’ve been distracted from real cures for 30 years because Big Pharma got its profit margin.
They don’t want a cure. They want a maintenance drug. And we’re all just numb, obedient sheep taking our 50mg twice a day like it’s communion.
David Cunningham
November 26, 2025 AT 19:56Man, I read this while sitting on my porch in Sydney with a coffee. My mate’s mum had ALS last year. She stayed on riluzole for 14 months. Didn’t get better. But she got to see her granddaughter’s first steps. That’s worth more than any stat.
Side effects sucked? Sure. But she never complained. Just said, ‘I’m still here.’ And that’s the real win.
Nikhil Chaurasia
November 27, 2025 AT 17:27This is a very thoughtful piece. I respect the honesty in admitting that riluzole doesn’t fix anything-it just buys time. In India, many families can’t even afford the monthly cost, let alone the liver tests. We need global access, not just better science.
Thank you for not pretending this is a miracle. Sometimes truth is the kindest thing we can give.
Holly Schumacher
November 27, 2025 AT 22:52Let’s be precise: riluzole does NOT extend survival ‘by 2 to 3 months’ universally. The median increase is 2.3 months, with a 95% confidence interval of 1.8–3.2. The original Lancet trial had a hazard ratio of 0.61, p=0.002. And yes, the 12% liver enzyme elevation is statistically significant at p<0.01. But what’s rarely mentioned is that 87% of patients show no elevation at all. So why do people conflate ‘common side effect’ with ‘universal risk’? Because anecdotes are louder than data.
Also, caffeine interaction: it’s CYP1A2 inhibition. Not ‘slows down clearance.’ Please stop misusing pharmacokinetic terminology.
Michael Fitzpatrick
November 28, 2025 AT 03:22I know it sounds cheesy, but I really believe that every extra day matters-even if you don’t feel different. My cousin took riluzole for 18 months. She didn’t get stronger. But she got to teach her students one last semester. She got to hold her dog on her lap while watching her favorite show. She got to say ‘I love you’ one more time before her voice went.
That’s not a statistic. That’s a life. And if this drug helps even one person have that moment? Then it’s worth every nausea pill and every blood test.
I don’t care if it’s ‘only’ 90 days. If those 90 days let you kiss your spouse goodbye properly? That’s a victory.
And if you quit because of side effects? I get it. But don’t guilt-trip the people who stayed. They’re not fools. They’re fighters.
Shawn Daughhetee
November 28, 2025 AT 17:41my liver enzymes went up after 6 months so i had to stop. felt like a betrayal. like the only thing i had was taken away. but i dont regret taking it. i got to see my daughter’s graduation. that’s all i needed.
Justin Daniel
November 29, 2025 AT 13:15Look, I get the drama around riluzole. But here’s the thing: if you’re gonna rage against the machine, at least make sure the machine is the real enemy. Riluzole isn’t the problem. The lack of funding, the lack of global access, the fact that we still don’t know why ALS starts-that’s the problem.
And honestly? I’m glad someone’s still taking it. Even if it’s just to buy a few more sunsets.
Also, the thin-film version? Genius. Less nausea. More dignity. Why didn’t we get this 10 years ago?
steve o'connor
November 30, 2025 AT 10:25My sister’s neurologist in Dublin said riluzole is like wearing a seatbelt in a car you know is going to crash. Doesn’t stop the crash. But it might mean you’re still conscious when it happens.
It’s not about living longer. It’s about being there for the last moments that matter.
ann smith
December 1, 2025 AT 11:05Thank you for this. 💙
Every word matters. Every day matters.
And every person who takes this drug? They’re not just patients.
They’re heroes.
And we see them.
We honor them.
And we’re here for them.
Always.
❤️
Julie Pulvino
December 2, 2025 AT 04:57I’ve been on riluzole for 2 years. Nausea was hell at first. Took me 3 months to get used to it. But I’m still walking. Still typing. Still laughing with my husband. My neurologist says I’m on the slower end of the curve. I don’t know if it’s the drug or luck.
But I’m not taking it off. Not yet.
Patrick Marsh
December 2, 2025 AT 20:37Stop. Riluzole. Not a cure. 2–3 months. Liver risk. 25% nausea. 12% enzyme rise. 50% discontinuation by 2 years. Access inequity. SOD1-specific alternatives exist. Edaravone is adjunctive. Cost: $300K for tofersen. Riluzole: $200–$500/month. First-line. Not perfect. Still essential.
Danny Nicholls
December 3, 2025 AT 17:54my mom’s on riluzole and honestly? it’s been a game changer for her. yeah she gets tired and her stomach’s weird but she still makes her famous apple pie 🥧 and sings to my niece every night. that’s more than i ever thought we’d get. thanks for writing this. 🙏❤️
Robin Johnson
December 5, 2025 AT 07:52Here’s the truth: riluzole isn’t about hope. It’s about discipline. Take it at 8am. Take it at 8pm. No skipping. No coffee after noon. Get your blood work. Log your symptoms. Show up for the hard stuff.
If you’re going to take it, take it right. Half-measures won’t cut it. And if you quit because it’s hard? That’s okay. But don’t pretend you didn’t give it a real shot.
Latonya Elarms-Radford
December 5, 2025 AT 13:17Oh, riluzole. The pharmaceutical equivalent of a handwritten note left on a dying man’s pillow: ‘We tried.’
It’s not medicine-it’s a monument to our collective failure. We’ve spent decades treating the symptom of glutamate excitotoxicity while ignoring the deeper, existential rupture in our understanding of neurodegeneration. We’re polishing the brass on the Titanic while the iceberg looms.
And now we celebrate a 90-day extension as if it’s a miracle? We’ve lowered our expectations so far, we’ve forgotten what healing even looks like.
Real progress would be a cure. Not a comfort. Not a delay. Not a placebo with a prescription label.
But no. We’d rather have a 50mg tablet that makes us feel like we’re doing something.
And so we sleepwalk through the apocalypse, one pill at a time.