ALS Treatment: All Your Options Explained

Each year, around 5,000 people in the U.S. are diagnosed with amyotrophic lateral sclerosis (ALS) - also commonly called Lou Gehrig's disease. This condition progresses rapidly and affects the brain and spinal cord. It leads to muscle breakdown and loss of muscle control. It can also cause paralysis.

ALS is a complicated condition that isn't fully understood. There aren't any treatments that can reverse or stop ALS. But, there are medications that can help slow down symptoms.

Here are the latest treatment options for people with ALS.

What medications are available for people with ALS?

FDA-approved treatments for ALS can help you manage symptoms and provide breathing support. Your healthcare team will work with you to create a plan that includes some or all of these treatments.

Riluzole

Riluzole was FDA-approved in 1995 and is a commonly prescribed treatment for ALS. It belongs to a group of medications called benzothiazoles, which work by changing the activity of chemicals in the body that may cause nerve and muscle damage. Riluzole's initial studies showed that it lengthens life expectancy for a person with ALS by 2 to 3 months. But, more recent studies suggest that riluzole may increase life expectancy by up to 19 months.

Riluzole is considered a safe and moderately effective option for slowing the progression of ALS. Riluzole can often be dispensed at a community pharmacy and comes as a tablet (Rilutek), oral film (Exservan), or oral suspension (Tiglutik). Riluzole tablets are available as a generic product, but the oral film and suspension are only available as brand-name medications.

Edaravone

Edaravone was FDA approved to treat ALS in 2017. This medication is also an antioxidant. Edaravone has been shown to slow down the loss of certain functions - such as movement and muscle breakdown - caused by ALS, especially when treated early. This medication was only available intravenously until 2022, when the FDA approved an oral form of edaravone.

Studies show that edaravone can help people with ALS live up to a year longer than those who don't take the medication.

Tofersen

Tofersen (Qalsody) was FDA-approved to treat ALS in 2023. Tofersen is approved to treat ALS associated with SOD1 gene mutations.Tofersen works by stopping the mutated SOD1 gene from making mutated proteins, which may play a role in the development of ALS.

Only about 2% of people with ALS have an SOD1 gene mutation, so not everyone living with ALS can benefit from this medication. Studies are still underway to see how people respond to Tofersen over longer periods of time.

Can you take medications for ALS symptoms?

Aside from medications that specifically treat ALS, there are other medications you can take to help manage your ALS symptoms, such as:

• Muscle cramps:Mexiletine is an oral medication that's been shown to relieve muscle cramps and have few side effects.

• Muscle stiffness: Different classes of muscle relaxers can help relieve muscle stiffness.

• Excessive saliva or phlegm production: People with ALS have trouble managing their saliva or phlegm. Many different medications can help lessen saliva production including glycopyrrolate (Robinul), propantheline, amitriptyline, and scopolamine.

• Involuntary emotional reactions: Many people with ALS find that medications like tricyclic antidepressants (TCAs) and selective serotonin reuptake inhibitors (SSRIs) can help with involuntary emotional reactions, like uncontrollable laughter or crying.

• Pain: There are many treatment options that can help with pain relief. Many people find that over-the-counter (OTC) options like aspirin, ibuprofen, and acetaminophen provide good pain relief.

Therapies and medical service options for ALS

If you or a loved one has ALS, you'll want to find a care team that has experience working with people with ALS. An experienced care team can help you navigate your treatment options and find the right therapies and tools to manage your day-to-day activities.

Your healthcare team will include different professionals like:

• Physicians: Your physician can prescribe medications and watch your response to them.

• Physical therapist: Your physical therapist will work with you to help strengthen your muscles and maximize your muscle function.

• Respiratory therapist: Your respiratory therapist will teach you how to use your breathing treatments and equipment. They'll also help give you these treatments.

• Nutritionist: Your nutritionist will help you develop a diet plan to make sure you get the nutrition you need as your ability to chew and swallow changes.

• Speech pathologist: Your speech pathologist will help you with your speech, vocalization, and swallowing.

• Occupational therapist: Your occupational therapist can help you learn to complete your everyday activities using assistive devices.

• Social worker: Your social worker will help you find community resources and support groups.

To find the best care, use the ALS Certified Centers Locator Tool available from the ALS Association.

Tools and devices for ALS

People with ALS often need adaptive tools and devices to manage symptoms and complete everyday activities. Some helpful equipments include:

• Computer-based brain synthesizer: These devices help people communicate even if they can't speak.

• Brain-computer interface: These devices help people control equipment like wheelchairs without needing to use their arms or legs.

• Breathing support: Different machines like respirators (ventilators) and noninvasive ventilators can help people breathe when they can't breathe on their own.

What can you do to slow the progression of ALS?

There's no treatment to cure ALS. However, there are FDA-approved medications to help slow its progression so that a person with ALS can live longer.

Riluzole and edaravone are both FDA-approved medications that have been shown to slow the progression of ALS.

What are the biggest risk factors for developing ALS?

The major risk factors for developing ALS are family history and age.

There are two known types of ALS - familial (fALS) and sporadic (sALS). fALS occurs when at least two people in the same family have the condition. sALS occurs when there's no family history of ALS. sALS is the most common type and accounts for 85% to 90% of cases, while fALS accounts for the remaining 10% to 15%.

ALS is more common in adults than children. The age of onset for sALS is 58 to 63 years and 47 to 52 years for fALS. People assigned male at birth are also twice as likely as people assigned female at birth to develop sALS.

What ALS treatment options are currently being studied?

There are several clinical trials studying possible treatments for ALS. Some of these treatments can be found below.

Masitinib

Masitinib belongs to a group of medications called tyrosine kinase inhibitors (TKIs). It blocks the activity of cells that cause nerve damage resulting in ALS. One study showed that the combination of riluzole and masitinib significantly slowed the progression of ALS compared with riluzole alone. Masitinib also helped people maintain a better quality of life and breathing for longer than those who didn't take it. But even though these results are intriguing, additional studies with more people are needed to confirm masitinib's potential benefits.

Stem cells

A stem cell is a type of cell that can grow into specific cell types. For example, a stem cell can turn into red blood cells, muscle cells, brain cells, and more. Research is being performed to investigate the potential use of bone marrow-derived mesenchymal stem cells (MSCs).

One study showed that a single treatment with MSCs significantly slowed progression of ALS for about 2 to 4 weeks. But, additional studies with more people will be needed to determine this treatment's effectiveness.

Is it possible to minimize my risk of developing ALS?

Smoking can raise your risk of developing ALS. Studies suggest that the longer you smoke the more likely you are to develop ALS. So quitting smoking can help lower your risk of developing ALS.

In addition, factors that raise oxidative stress - a type of chemical imbalance in the body - can also worsen the risk for developing ALS. Eating a diet high in fruits, vegetables, and fish and low in processed foods can lower your risk of developing ALS.

ALS coping and support

Support groups can help you and your family learn more about ALS. Finding a community lets you access resources and gives you a space to ask questions and learn from other people's experiences.

There are also several ALS organizations that can help you find resources and treatment teams including:

• Your ALS Guide

• ALS Association

• Muscular Dystrophy Association

• Everything ALS