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ALS Treatment Options

Treatment options for Amyotrophic lateral sclerosis (ALS) are focused on managing the symptoms associated with the disease and also attempting to slow down the rate at which it progresses.

Amyotrophic lateral sclerosis is a progressive neurological disorder that causes loss of voluntary muscle movement. The degeneration and death of brain and spinal cord nerves lessens the body’s ability to use the neurons in muscles.

When these neurons weaken or die off, muscle movement is lessened or stopped altogether. Everyday tasks become increasingly difficult for patients to perform as the disease progresses and ultimately, the ability to eat and breath will also be affected.

Is There a Cure for ALS?

There is currently no cure for ALS and treatment options cannot reverse the damage caused by the disease. Two different drugs have been approved by the U.S Food and Drug Administration (FDA), but these medicines are used to slow down the progression of the disease and alleviate certain symptoms.

ALS treatment options consultation

How is ALS Treated?

Treating ALS will typically involve the use of approved medications and supportive therapies to help the patient manage the symptoms associated with the disease more effectively. Treatment options will focus on improving the quality of life of the patient and slowing down the rate in which the disease progresses. 

Promising treatment options for amyotrophic lateral sclerosis such as regenerative medicine have yet to be approved by the FDA. In the USA, access to this form of treatment is currently only available if the patient is selected to participate in a clinical trial.

ALS Medications

FDA approved ALS treatment drugs rilutek and radicava

Two drugs have been approved by the FDA for the treatment of ALS:

Riluzole (Rilutek) – This oral medication can increase life expectancy by three to six months. Riluzole was the first drug approved by the FDA for the treatment of ALS back in 1995 and since then it has become available in many other countries around the world.

Side effects of Riluzole may include changes in liver function, dizziness and gastrointestinal issues. 

Edaravone (Radicava) – Administered by intravenous injection, this medication has been shown to lessen the rate of decline in daily functioning. Edaravone is currently available in the USA, Canada, Japan and South Korea and became approved by the FDA in 2017. The drug is administered to ALS patients every day for a period of two weeks each month.

The side effects associated with Edaravone include shortness of breath, headaches, bruising and issues with walking.

In September 2018, the FDA approved a liquid form of the riluzole as an additional treatment of ALS. Known as Tiglutik, this drug was created to help ALS patients avoid any complications associated with taking the oral pill form of riluzole. 

2011 saw the approval of another drug (Nuedexta) by the FDA to treat pseudobulbar affect, a symptom sometimes associated with ALS. Pseudobulbar affect refers to bouts of inappropriate crying or laughing and is something which can develop in ALS patients.

Regenerative Treatment

Stem Cell treatment for ALS

Regenerative treatment (also known as cellular therapy) is one of the most recent and rapidly expanding treatments for amyotrophic lateral sclerosis. In these therapies, motor neurons are generated by scientists outside of the patient’s body. 

The cells selected for this therapy style are the most basic kind in the body and operate as building blocks to create a multitude of organs and organ systems. The versatility of these cells makes them great for replacing and repairing the neurons affected by ALS.

Considered as a breakthrough treatment for ALS, regenerative treatment has been shown to slow down the progression of the disease as well as alleviate some of the associated secondary symptoms.

It’s believed that regenerative therapy may even have the potential to reverse neurological damage that has already occurred in patients diagnosed with ALS. 

However, it is worth noting that this treatment is still considered a relatively emerging and alternative mode of treatment, but the findings from the research into this form of treatment have so far been very promising

This research is leading to new leaps in disease knowledge. Cellular therapy has led to the discovery of a toxic signal in ALS patients that kills neurons. Scientists can now see the effects of drugs on ALS-afflicted cells more directly, eliminating the time and hassle of starting disease testing with human trials.

What is the Best Treatment for ALS?

When it comes to considering the best treatment for amyotrophic lateral sclerosis, it’s important to remember once again that there is currently no cure for this disease. Two treatments have been approved by the FDA: Riluzole (Rilutek) and Edaravone (Radicava).

The progression of the disease can be slowed down by using these drugs, which can extend the life of patients diagnosed with ALS.

Using alternative treatments, such as regenerative medicine, can also slow down the progression of the disease and it’s believed that this is generally a more effective way to treat ALS.

However, this form of treatment has not been approved by the FDA. In the USA, receiving regenerative treatment for ALS will only be possible if the individual is accepted to partake in a clinical trial. 

Continuous research into the efficiency of regenerative medicine as a means of treating ALS patients may see it being approved by the FDA in the future – but for now it is not a viable option for the majority of those affected by the disease.

ALS Treatment Options in Canada

The focus of treatment for ALS in Canada, as in the USA, is on helping the individual to cope with the gradually worsening symptoms. In the early stages of the disease, this might mean having speech therapy, using assistive devices such as walking frames and wheelchairs and undergoing physiotherapy.

When the disease progresses, options such as feeding tubes and speech generation technology is used.

As mentioned above, there is currently no cure for ALS but two drugs have approved for use and these have shown promise in slowing down the progression of the disease.

The first is Riluzole (Rilutek) which has been shown to reduce the release of glutamate, an amino acid that is involved in the transmission of nerve impulses. It slows down the development of breathing difficulties and can extend life expectancy in some patients.

Edaravone (Radicava) was recently approved for the treatment of ALS in Canada. This drug is thought to act by reducing the build-up of antioxidants and has been shown to slow the loss of certain physical functions in ALS patients and again extend life expectancy.

ALS Statistics Canada

According to the statistics:

  • Around 3,000 people in Canada are currently living with the disease and about 1,000 people either die or are diagnosed with this condition each year.
  • 80% of those with ALS die within 2 to 5 years following diagnosis, the majority from respiratory failure.
  • Similar to the rest of the world, between 5 and 10% of those diagnosed with ALS exhibit a familial or genetic component to the disease.
  • The rest, some 90%, are considered sporadic or non-genetic but research tends to suggest this figure might change over time as more information becomes available.

ALS Treatment Options in the United Kingdom (UK)

There are two drug treatment options that are available which can help slow down the progress of the disease. ALS treatment in the UK, however, is currently limited to one of these medications; Riluzole (Rilutek). This drug works by limiting the release of the neurotransmitter glutamate and has been shown to slow down the decline in breathing function and has, in some cases, extended life expectancy in patients.

Radicava (Edaravone) is available in Japan (where it was developed), South Korea, the USA and also Canada. It is currently not sanctioned through NICE, the governing body for medicines in the United Kingdom.

Radicava is thought to remove free radicals that are produced during cell energy production but the exact mechanism of how it works in relation to motor neuron disease is not fully understood. The drug is currently undergoing clinical trials concerning its efficacy in treating ALS.

ALS Statistics in the United Kingdom (UK)

As with many countries around the world, ALS is often described under the collective term of motor neuron disease (MND). Whilst ALS falls under this umbrella term, the statistics available often include data relating to separate diseases such as primary lateral sclerosis and progressive bulbar palsy.

These are serious and generally fatal neurodegenerative conditions that currently have no cure. We can assume, however, that the incidence of ALS follows a similar pattern to countries such as the USA where the data is more clearly defined.

According to the statistics:

  • There are thought to be some 5,000 people across the whole of the UK with the disease and incidence across Europe is 2 to 3 in 100,000 people.
  • As in other areas of the world, the disease is normally fatal in older populations, with death occurring for more than half of patients within 3 to 5 years following diagnosis.
  • While the disease affects motor neuron health and muscles, it also causes some cognitive change such as memory problems and difficulties in decision making for about 35% of patients.
  • Between 5 and 10% of patients will also exhibit some form of frontotemporal dementia.

There is a slightly higher predominance of ALS in males than females, particularly in older groups.

ALS Treatment Options in Australia

Currently, only Riluzole (Rilutek) has been approved for the treatment of ALS in Australia.

Radicava (Edaravone), which has been cleared for use in Japan, South Korea, the USA and also Canada, has not been approved for patients in Australia. There is, however, a special access scheme that means individuals with ALS can apply for a dispensation to access the drug.

Various groups are currently lobbying the Therapeutic Goods Administration (TGA) to have Radicava approved. It should be noted that the Japanese manufacturers of Radicava have yet to apply to the TGA to have the drug approved.  

ALS Statistics Australia

Unlike the USA, Australia tends to blanket statistics under the umbrella term motor neuron disease (MND) rather than ALS. This makes it difficult to get a full understanding of the prevalence of the disease, although ALS is the most common form of MND.

According to MND Australia:

  • MND affects 1 in 11,434 Australians.
  • Research carried out in 2015 found that there were just over 2,000 people suffering from the disease of which 60% were men.
  • The highest rate was seen in males between the ages of 75 and 84 years.
  • As in other parts of the world, only between 5 and 10% of ALS cases have a genetic or familial component, although further research in this area may point to a stronger connection.
  • Mortality rate is high across all age groups and death occurs largely because of respiratory failure, on average two to four years after diagnosis.

ALS Treatment Options in New Zealand

ALS treatment in New Zealand largely follows the same protocols as in other countries like the USA, however fewer medications have been approved.

Riluzole (Rilutek) is available and has been approved for the treatment of ALS in New Zealand but Radicava (Edaravone) has not. Both drugs work to slow down the disabling effect of the disease which means individuals are able to maintain mobility and speech for longer. In some cases, the drugs extend life expectancy.

Whilst Radicava isn’t currently available for prescription, individuals with ALS can go to their doctor and ask for an exemption under the section 29 of the Medicines Act 1981. According MND New Zealand, however, this can be a challenging and expensive process for those with ALS. As of yet, the Japanese manufacturer of Radicava has not applied for the drug to be accepted by the New Zealand health authorities.

ALS Statistics New Zealand

As in Australia, New Zealand uses the umbrella term motor neuron disease (MND) to include ALS. Whilst ALS is the most common motor neuron disease, the figures often also include individuals that have been diagnosed with conditions such as progressive muscular atrophy and primary lateral sclerosis.

According to MND New Zealand:

  • MND affects one in 15,000 people and there are thought to be about 300 individuals with the disease in New Zealand.
  • The majority of people diagnosed with MND are over 40 and the most affected group is those between 50 and 70.
  • The average prognosis means that individuals diagnosed with the disease last between 20 and 48 months.
  • The genetic component of the disease matches statistics from the rest of the world: 10% of the cases have a familial basis while 90% are termed sporadic.
  • About 15% of individuals diagnosed with MND exhibit frontotemporal dementia.

A recent report the peer-reviewed Neurology journal reported the highest incidence of ALS in Canterbury, New Zealand and showed that there had been a 3% increase over a 22 year period.

Supportive Therapies

Physiotherapy as a supportive treatment for ALS

There are several supportive, non-drug, therapies which can be used in the treatment of ALS. Many of them can help to alleviate the symptoms associated with the disease as well improve the patient’s overall quality of life 

Physiotherapy – The use of physiotherapy, also known as physical therapy, can help patients to cope better with certain symptoms associated with ALS. Amyotrophic lateral sclerosis causes muscle weakness which can have a profound effect on the individual’s quality of life. Physiotherapy can be effective in the restoration and maintenance of the patient’s flexibility, physical strength and range of motion.

Occupational Therapy – Occupational therapy is commonly used in the management of amyotrophic lateral sclerosis. This form of therapy focuses on helping the patient to continue to perform functional routine tasks effectively. The primary goal of occupational therapy is to improve the quality of life of the patient and to allow them to remain independent as their disease continues to progress.

Daily tasks such as buttoning a shirt or using a knife and fork to cut food will become increasingly difficult as the symptoms associated with ALS become more severe. An occupational therapist will work closely with the patient to help them overcome these issues by providing support, guidance and a custom exercise program focused on performing routine tasks.

Speech Therapy – Slurred speech is a common symptom associated with amyotrophic lateral sclerosis. Working with a speech therapist can enable the patient to communicate more effectively as the disease progresses.

Diet and Nutrition

Ketogenic diet

Strategic diets can enhance neuron lifespan and health. There are certain nutritional plans that have shown promise in terms of slowing down the progression of amyotrophic lateral sclerosis. 

The Ketogenic Diet employs dietary restrictions and recommendations to convert metabolism in the body to a ketogenic state, leading to the body burning fat rather than carbohydrates. This protects the body’s neurons and can help combat the neurodegenerative effects of ALS. Other neurologists have found success with diets high in carbohydrates and calories.

One new diet, however, is catching the eye of the medical community worldwide. This metabolic plan is called the Deanna Protocol. The Deanna Protocol focuses on many substances commonly found in the body (AAKG, AKG, GABA, CoQ10, Niacin, and 5HTP) that are lacking in bodies with ALS. These substances support the decrepit neurons and can prolong the ALS patient’s lifespan.

Whilst the supplements are the main part of the Deanna Protocol, the full program includes massages and strategic exercise. Approximately 75% of those who went on the Deanna Protocol reported slowed progression and reduced symptoms.

In some cases, the progression of ALS has been stopped altogether. It has even reversed symptoms in its titular patient, Deanna Tedone-Gage.

Diets are a favored mode of supportive ALS treatment as they can easily supplement other, more direct treatment plans. These lifestyle changes are great for assisting the powerful changes made by drugs or regenerative medicine.

However, dietary changes are often not as effective when used on their own, making them a complicated treatment method.

Individuals diagnosed with amyotrophic lateral sclerosis should always consult a medical professional before making any changes to their diet, preferably one with extensive experience in dealing with ALS patients.

ALS treatment options consultation

Last updated March 05, 2020