Amyotrophic Lateral Sclerosis: How Riluzole Slows Neurodegeneration and Extends Life

What Is ALS, Really?

ALS, or amyotrophic lateral sclerosis, is a disease that quietly eats away at the nerves controlling your muscles. It doesn’t attack your brain’s ability to think or feel - your mind stays sharp. But the signals from your brain to your arms, legs, and breathing muscles slowly fade. You start dropping things. Your voice gets weaker. Walking becomes a struggle. Eventually, even breathing becomes a battle. Most people live 3 to 5 years after symptoms begin. There’s no cure. But there’s one drug that’s been helping people buy time for nearly 30 years: riluzole.

How Riluzole Works - And Why It’s Not a Miracle

Riluzole isn’t a cure. It doesn’t reverse damage. It doesn’t bring back lost strength. But it does slow things down - just enough to matter. It works by calming down a chemical in your brain called glutamate. Too much glutamate overstimulates nerve cells until they burn out. In ALS, this process happens faster than normal. Riluzole blocks excess glutamate from firing off too hard, protecting the remaining motor neurons.

It also slows down sodium channels in nerve endings, which helps reduce the flood of signals that can overwhelm dying neurons. These effects together reduce the rate at which motor neurons die. The result? A small but real delay in when you might need a breathing tube or when the disease takes your life.

Studies show riluzole cuts the risk of death or tracheostomy by about 35% over 18 months. That sounds big - until you realize the actual survival gain is just 2 to 3 months on average. For someone facing a death sentence, those extra weeks mean more birthdays, more conversations, more time holding a grandchild’s hand. That’s why so many people take it, even when the side effects are rough.

The Three Ways You Can Take Riluzole

When riluzole first came out in 1995, it was only available as a 50mg tablet. Now, there are three forms - each designed to make life easier for people with ALS:

• Tablets (Rilutek): The original. Two 50mg pills a day, taken 12 hours apart. Easy to swallow - if you can still swallow.
• Oral suspension (Tiglutik): A liquid version for people who can’t swallow pills. It’s thicker than water, so it stays in the mouth longer, reducing choking risk.
• Oral thin film (Exservan): A dissolvable strip placed under the tongue. It absorbs quickly, bypasses the stomach, and causes fewer nausea issues. It’s also more bioavailable, meaning more of the drug gets into your bloodstream.

The standard dose is 100mg daily - split into two 50mg doses. You take it on an empty stomach, at least an hour before or after meals, because food can cut absorption by half.

Side Effects - The Price of Extra Time

Most people feel something when they start riluzole. The most common issue? Nausea. About 1 in 4 people get sick to their stomach, especially in the first few weeks. Diarrhea affects 1 in 7. Fatigue hits 1 in 5. These aren’t minor inconveniences - they can make already exhausting days even harder.

The real danger is liver damage. About 1 in 8 people develop elevated liver enzymes. That doesn’t mean you have liver disease - but it means your liver is stressed. That’s why doctors require blood tests before you start, then every month for the first three months. If enzymes climb too high, you stop the drug. One Reddit user wrote: “After 9 months, my liver enzymes were 3x normal. I had to quit. Frustrating when the only drug that might help damages your liver.”

Other risks include dizziness, weakness, and a rare but serious condition called neutropenia - a drop in white blood cells that makes you more prone to infections. About 8% of patients stop riluzole because side effects become unbearable.

Who Shouldn’t Take Riluzole?

Not everyone can use it. If your liver is already damaged - say, from hepatitis or heavy alcohol use - riluzole can be dangerous. People with Child-Pugh Class B or C liver disease should avoid it entirely. The drug builds up in your system and can cause toxic levels.

Renal impairment doesn’t require dose changes - your kidneys don’t process riluzole much. But if you’re on theophylline (for asthma or COPD), riluzole can raise its levels by 25-30%, increasing side effects like rapid heartbeat or seizures. Caffeine - coffee, tea, energy drinks - slows down how fast your body clears riluzole. One cup of coffee can increase drug levels by 15-20%. That’s why some neurologists tell patients to cut back on caffeine while on riluzole.

Real People, Real Choices

A 2022 survey of nearly 3,000 ALS patients found that 78% started riluzole after diagnosis. By the one-year mark, 63% were still taking it. At two years? Only 47%. People stop for many reasons: side effects, cost, or simply feeling like it’s not helping.

But many keep going. On ALS patient forums, 62% of respondents said they stayed on riluzole because they believed it gave them more time. One user wrote: “Been on Rilutek for 18 months. Nausea was brutal the first 3 months, but now manageable. My neurologist says my progression is slower than average - can’t prove it’s the riluzole, but I’d take any chance for more time.”

That’s the quiet truth of ALS treatment. You’re not chasing a cure. You’re chasing moments. An extra Christmas. A final walk with your dog. A phone call with a friend you haven’t seen in years. Riluzole doesn’t promise recovery. But for many, it offers something almost as valuable: a little more time to say goodbye.

How Riluzole Compares to Other ALS Drugs

For 22 years, riluzole was the only drug approved for ALS. Then came edaravone in 2017, and later tofersen in 2023. But none of them replaced riluzole - they added to it.

Edaravone (Radicava) is an antioxidant that reduces oxidative stress in motor neurons. It’s given as a daily IV infusion for two weeks, then monthly. It doesn’t extend life - but it slows functional decline in some patients, especially early-stage ALS. It’s expensive and burdensome. Riluzole wins on convenience.

Tofersen (Qalsody) is a gene therapy for the 2% of ALS patients with a specific SOD1 gene mutation. It’s injected into the spinal fluid. It’s not for everyone. But it proves targeted treatments are possible. Riluzole works for everyone - regardless of genetics.

Right now, riluzole remains the most widely used ALS drug globally. About 80-85% of newly diagnosed patients in North America and Europe start it. In low-income countries, cost blocks access - only 15-20% can afford it without help. That’s a problem no other drug fixes.

The Future of Riluzole

Patents expired years ago. Generic versions are cheap. But that doesn’t mean riluzole is outdated. Researchers are testing it in new combinations. At the University of Michigan, scientists are pairing riluzole with sodium phenylbutyrate - a compound that helps clean up damaged proteins in nerve cells. Early results look promising.

Meanwhile, the thin film version (Exservan) is changing how people take it. In trials, it caused 30% fewer stomach issues than tablets. More people stick with it. That’s progress.

Experts agree: riluzole won’t be the last ALS drug. But it’ll likely be the first. For now, it’s the foundation. New therapies may come, but they’ll still build on the same idea: protect neurons, slow the fire, buy time.

Starting Riluzole - What to Expect

If your doctor prescribes riluzole, here’s what usually happens:

1. You’ll get a blood test to check your liver function.
2. You start with one 50mg pill a day for a week.
3. Then you increase to two pills a day - morning and night.
4. You’ll have another blood test after 30 days, then every month for the first three months.
5. If your liver enzymes stay normal, you’ll switch to checks every 3-6 months.
6. Keep a symptom journal. Note nausea, fatigue, dizziness. That helps your doctor decide if the benefits outweigh the costs.

Adjustment takes time. Most people feel better after 2-4 weeks. If nausea hits hard, take the pill with a small snack - even a few crackers. Don’t skip doses. Missing even one can drop your drug levels enough to lose the protective effect.

Final Thoughts: A Modest Drug, A Meaningful Impact

Riluzole isn’t glamorous. It doesn’t make headlines. It doesn’t restore movement. But in a disease where progress is measured in weeks, not years, it’s one of the few tools we have.

It’s not perfect. It’s not easy. But for tens of thousands of people around the world, it’s the difference between saying goodbye too soon - and having just enough time to say it right.