Created at:1/13/2025
Riluzole is a prescription medication specifically designed to help people living with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease. This medication works by protecting nerve cells in your brain and spinal cord, potentially slowing the progression of this challenging condition.
While riluzole isn't a cure for ALS, it represents an important treatment option that can help extend quality time with loved ones. Understanding how this medication works and what to expect can help you feel more confident about your treatment journey.
Riluzole is a neuroprotective medication that specifically targets the nervous system. It belongs to a class of drugs called glutamate inhibitors, which work by reducing excessive nerve activity that can damage motor neurons.
The medication comes as an oral tablet that you take by mouth twice daily. It's been approved by the FDA since 1995 and has helped thousands of people manage their ALS symptoms more effectively.
Think of riluzole as a protective shield for your nerve cells. While it can't repair damage that's already occurred, it may help slow down further deterioration of the motor neurons that control your muscles.
Riluzole is primarily prescribed for treating ALS, a progressive neurological disease that affects nerve cells controlling voluntary muscle movement. This condition gradually weakens muscles throughout your body, making everyday activities increasingly difficult.
The medication is typically recommended for people in the early to moderate stages of ALS. Your doctor might suggest starting riluzole soon after your diagnosis to potentially maximize its protective benefits.
In some cases, doctors may prescribe riluzole off-label for other motor neuron diseases or neurological conditions. However, ALS remains its primary and most well-studied use, where clinical trials have shown meaningful benefits.
Riluzole works by blocking excessive amounts of glutamate, a chemical messenger in your nervous system. When glutamate levels become too high, it can damage or kill the motor neurons that control your muscles.
The medication is considered a moderate-strength neuroprotective drug. It doesn't provide immediate symptom relief like some stronger medications, but instead works gradually to preserve your remaining nerve function over time.
Additionally, riluzole may help stabilize electrical activity in nerve cells and reduce inflammation in your nervous system. These combined effects create a more protective environment for your motor neurons, potentially slowing disease progression.
Take riluzole exactly as your doctor prescribes, typically one 50mg tablet twice daily, about 12 hours apart. The standard total daily dose is 100mg, but your doctor may adjust this based on your individual needs.
It's best to take riluzole on an empty stomach, at least one hour before eating or two hours after a meal. Food can reduce how much medication your body absorbs, making it less effective.
Try to take your doses at the same times each day to maintain steady levels in your system. Many people find it helpful to set phone reminders or use a pill organizer to stay consistent with their dosing schedule.
Swallow the tablets whole with a full glass of water. Don't crush, chew, or break the tablets, as this can affect how the medication is released in your body.
Riluzole is typically a long-term treatment that you'll continue taking as long as it remains beneficial and well-tolerated. Most people with ALS take this medication for months to years, depending on their individual disease progression.
Your doctor will regularly monitor your response to the medication and check for any side effects. They'll assess whether riluzole continues to provide meaningful benefit as your condition changes over time.
Never stop taking riluzole suddenly without discussing it with your healthcare team first. Even if you don't notice immediate improvements, the medication may still be providing important protective effects for your nerve cells.
Most people tolerate riluzole well, but like all medications, it can cause side effects. Understanding what to expect can help you feel more prepared and know when to contact your doctor.
Here are the most common side effects you might experience, affecting roughly 10-20% of people taking riluzole:
These symptoms are usually mild and often improve as your body adjusts to the medication over the first few weeks.
Less common but more serious side effects can occur, though they affect fewer than 5% of people taking riluzole:
Your doctor will monitor your liver function with regular blood tests, typically every month for the first three months, then every three months thereafter.
Rare but serious side effects that require immediate medical attention include:
If you experience any of these serious symptoms, contact your doctor immediately or seek emergency medical care.
Riluzole isn't suitable for everyone, and certain medical conditions or circumstances may make it unsafe for you. Your doctor will carefully review your medical history before prescribing this medication.
You should not take riluzole if you have a known allergy to the medication or any of its ingredients. Signs of allergic reactions can include rash, itching, swelling, or difficulty breathing.
People with severe liver disease or significantly elevated liver enzymes should avoid riluzole, as the medication can further stress liver function. Your doctor will check your liver function before starting treatment.
Special caution is needed if you have:
Pregnancy and breastfeeding require careful consideration, as the effects of riluzole on developing babies aren't fully known. Your doctor will weigh the potential benefits against possible risks.
Age alone doesn't prevent riluzole use, but older adults may need closer monitoring due to increased sensitivity to side effects and potential interactions with other medications.
Riluzole is available under several brand names, with Rilutek being the most well-known original brand. This was the first FDA-approved version of riluzole for ALS treatment.
Tiglutik is another brand name for riluzole, but it comes as an oral suspension (liquid) rather than tablets. This form can be helpful for people who have difficulty swallowing pills due to ALS progression.
Generic versions of riluzole are also widely available and contain the same active ingredient as the brand-name versions. These generic options are typically more affordable while providing equivalent effectiveness.
Currently, riluzole remains one of the primary medications specifically approved for ALS treatment. However, other treatment options exist that may be used alongside or instead of riluzole in certain situations.
Edaravone (brand name Radicava) is another FDA-approved medication for ALS that works differently from riluzole. It's given as an intravenous infusion and may be used in combination with riluzole for some patients.
Sodium phenylbutyrate-taurursodiol (brand name Relyvrio) is a newer medication that received FDA approval for ALS treatment. It combines two compounds that may help protect nerve cells through different mechanisms.
Your doctor might also recommend supportive treatments like physical therapy, occupational therapy, speech therapy, or nutritional support. These approaches don't replace riluzole but can significantly improve quality of life alongside medication treatment.
Riluzole and edaravone work through different mechanisms, so comparing them directly isn't straightforward. Both medications have shown benefits in clinical trials, but they protect nerve cells in different ways.
Riluzole is typically easier to use since it's an oral medication you take at home twice daily. Edaravone requires intravenous infusion at a healthcare facility, which can be more time-consuming and inconvenient.
Some people may benefit from taking both medications together, as they target different aspects of ALS progression. Your doctor will consider your specific situation, disease stage, and overall health when recommending the best treatment approach.
The choice between these medications often depends on practical factors like your ability to travel for infusions, insurance coverage, and how well you tolerate each medication's side effects.
Q1:Is Riluzole Safe for People with Heart Disease?
Riluzole is generally considered safe for people with heart disease, as it doesn't directly affect heart function. However, your doctor will want to monitor you more closely if you have cardiovascular conditions.
The medication can occasionally cause dizziness or fatigue, which might be more noticeable if you're already taking heart medications. Your doctor may need to adjust dosing or timing of your various medications to minimize interactions.
Q2:What Should I Do if I Accidentally Take Too Much Riluzole?
If you accidentally take more riluzole than prescribed, contact your doctor or poison control center immediately. Taking too much can increase your risk of serious side effects, particularly liver problems.
Don't try to "make up" for the extra dose by skipping your next scheduled dose. Instead, continue with your regular dosing schedule and let your healthcare team know what happened so they can monitor you appropriately.
Q3:What Should I Do if I Miss a Dose of Riluzole?
If you miss a dose of riluzole, take it as soon as you remember, as long as it's not close to your next scheduled dose. If it's within 6 hours of your next dose, skip the missed dose and continue with your regular schedule.
Never take two doses at once to make up for a missed dose, as this can increase your risk of side effects. Set reminders on your phone or use a pill organizer to help you remember your doses more consistently.
Q4:When Can I Stop Taking Riluzole?
The decision to stop riluzole should always be made in consultation with your doctor. You might consider stopping if you experience serious side effects that don't improve, or if the medication no longer seems to provide benefit.
Your doctor will help you weigh the potential benefits of continuing treatment against any risks or side effects you're experiencing. They may suggest trying dose adjustments or other strategies before stopping completely.
Q5:Can I Drink Alcohol While Taking Riluzole?
It's best to limit or avoid alcohol while taking riluzole, as both substances can affect your liver. Combining them may increase your risk of liver problems and can worsen side effects like dizziness or fatigue.
If you choose to drink occasionally, discuss this with your doctor first. They may recommend additional liver function monitoring or suggest specific limits based on your individual health status.