Don’t delay: Unpacking the benefits of early ALS intervention

Last updated June 17, 2024, by Lindsey Shapiro, PhD
Fact-checked by Ines Martins, PhD

There are several approved therapies that slow the progression of amyotrophic lateral sclerosis (ALS) and extend the lives of those with the condition. In addition to specific ALS medications, various supportive care interventions also are available that make it easier for people with ALS manage their daily lives.

A holistic treatment for ALS combining these interventions is commonly used to manage the disease. While not a cure for ALS, this multifaceted care approach helps maintain independence for longer and improves the quality of life for both those with ALS and their caregivers — especially when started right after an ALS diagnosis.

The importance of starting treatments early

In ALS, the nerve cells responsible for voluntary muscle control are progressively damaged and die. This leads to rapidly worsening weakness in the limbs and muscles involved in speech, swallowing, and breathing. As more nerve cells are damaged, symptoms become increasingly worse, making it hard to do everyday tasks.

While ALS treatments can help slow down nerve cell damage and delay the worsening of symptoms, existing therapies cannot restore physical functions that have already been lost.

If a person whose muscle weakness has progressed to the point where they need a wheelchair, ALS therapies are unlikely to help them walk again. However, if a person begins treatment when they can still walk, ALS medications might be able to maintain that ability for a longer period.

For this reason, it’s crucial that treatments are started as soon as possible after an ALS diagnosis, enabling people with the disease to be independent for as long as possible. Prompt treatment also can help manage ALS symptoms more effectively, contributing to a higher overall quality of life.

While an ALS diagnosis can be overwhelming and may take some time to process, it is important to start working with doctors immediately to find the right treatment plan that will help maintain your health for as long as possible.

A prompt diagnosis is also critical for early access to treatments, although the first signs of ALS can be subtle, which often causes a diagnostic delay of about a year. This is why it’s important to get medical attention as soon as there are any signs suggestive of ALS, such as muscle twitches or weakness, slurred speech, or difficulties with chewing and swallowing.

Value of treatments

Multiple treatment approaches may be used for managing ALS, each intended to help with different aspects of the disease.

ALS-specific medications work in various ways to prevent or slow nerve cell damage. Their goal is to preserve motor function and maintain the ability to walk, breathe, speak, and swallow for the longest possible time. Three ALS therapies are currently approved in the U.S.:

Riluzole, which is used for all ALS patients, is available as oral tablets (Rilutek), a liquid suspension (Tiglutik), or as a film that dissolves on the tongue (Exservan).
Edaravone, also approved for all ALS patients, is sold as an injectable (Radicava) and liquid formulation (Radicava ORS).
Qalsody (tofersen), used solely for ALS patients with mutations in the SOD1 gene, is administered via an injection into the spinal canal (intrathecal).

Other more general medications might be given to help manage ALS symptoms, including ones to ease muscle cramps, reduce saliva production, or treat mental health disorders.

In addition to medications, treatment options including supportive care and ALS nursing interventions can assist with maintaining functional independence and improving overall well-being. As with medications, starting these interventions as early as possible typically leads to the greatest benefits. Supportive interventions for ALS might include:

physical therapy to help improve strength and mobility
occupational therapy to aid a person in doing daily activities independently
speech therapy to help with communication and swallowing issues
respiratory therapy to preserve lung function and breathing abilities
nutritional interventions to manage swallowing difficulties and prevent malnutrition
mental health support for coping with the emotional impact of ALS
adaptive equipment, such as wheelchairs, respirators, feeding tubes, and other devices, to help manage the loss of certain abilities as ALS progresses.

There also is growing interest in herbal treatments for ALS. They are believed to have antioxidant and anti-inflammatory effects that help to slow disease progression. Still, the safety and benefits of natural treatments for ALS have not been fully established in clinical trials, so herbal remedies should not replace approved ALS medications. Discuss with your doctor first before trying any alternative medicines.

Other promising treatments for ALS are also in experimental stages. Eventually, should their benefits be proven in clinical trials, these treatments may be incorporated into ALS care regimes.

A multidisciplinary approach to ALS care

A holistic approach encompassing the different aspects of ALS care is best for managing the disease and helping a person feel as healthy as possible. It is recommended people with ALS use approved ALS disease-modifying therapies along with symptomatic medications and supportive care approaches to best maintain their physical abilities.

Combining approved ALS therapies

After being diagnosed, the majority of ALS patients begin lifelong treatment with riluzole. As the first medication approved for ALS, riluzole was available for about two decades before other ALS treatments were approved, which made it a mainstay treatment for the condition.

But with the introduction of other disease-modifying therapies in recent years, scientists are starting to explore the potential benefits of combining them for managing the disease.

Because ALS is a complex disease where various cellular pathways contribute to nerve cell death, combining approved ALS medications may simultaneously target different disease aspects. This may potentially slow ALS progression more effectively than any one treatment can on its own.

While there isn’t a lot of clinical data, evidence seems to support the use of combination therapies as being beneficial for people with ALS. For example, studies show that riluzole combined with edaravone slows disease progression better than using riluzole alone.

Also, some recent clinical trials have explored experimental therapies in people taking standard of care ALS medications — including riluzole and edaravone. The data so far has shown the approach to be safe.

However, this research is still in its early stages, and there aren’t yet any standardized guidelines for combining ALS therapies. Your doctor can help determine if trying more than one approved ALS medication is right for you.

Creating a multidisciplinary care plan

While a multidisciplinary approach is considered the best way to manage ALS, each patient is unique, and specific care plans may vary from person to person. You should work closely with all members of your healthcare team to create a treatment plan that’s tailored to your individual needs and preferences.

After a diagnosis, you can take action by staying informed about the latest ALS treatment breakthroughs and learning more about the disease in general — which may help you be more actively involved in care decisions.

While doctors, nurses, and other specialists are trained to manage ALS, patients are experts in their own experiences. They bring insights into their specific needs and how they feel in response to various interventions, which is critical for developing an effective care plan.

Barriers to treatment

After being given a diagnosis and prescribed various treatments, you may still encounter barriers to accessing necessary care. These barriers can affect your ability to start or continue treatment, potentially affecting disease outcomes.

The overall cost of living with ALS is high and requires a wide range of medications, therapies, equipment, and caregiving support. While insurance companies might cover these expenses, they often involve a preapproval process where a person must request coverage and prove a treatment is necessary before being able to start it.

In some cases, these requests are denied, placing a significant burden on patients and their families. In other cases, insurance companies might require patients to try a less effective, cheaper, intervention first — and show that they don’t respond to it — before covering a more effective and expensive option.

While these situations are frustrating — especially when dealing with a recent ALS diagnosis and the stress it entails — regular communications with your healthcare providers and insurance companies can help you best understand your options, including any financial assistance that might be available, to minimize delays in accessing care.

Being as educated as possible about ALS and its care also will help you and your family make the best decisions for your particular situation.

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.