ALS and the COVID Vaccine: Is It Safe?

As COVID vaccines became widely available in 2021, the ALS Association recommended that people with amyotrophic lateral sclerosis (ALS) discuss getting vaccinated with their healthcare provider as soon as possible. There is no evidence that COVID vaccines trigger or accelerate the symptoms of progressive neurological diseases like ALS.

This article will discuss how COVID vaccinations can help protect people with ALS in the same way they do almost all individuals, including safety, which type to get, side effects, timing, and where to get the vaccine. It will also note the risks of COVID-19 for people with ALS.

Person with ALS receives a COVID vaccine

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Is the COVID Vaccine Safe and Effective for People With ALS?

In the United States, all approved COVID vaccines were developed following rigorous safety and efficacy protocols. The vaccines have prevented severe illness and hospitalizations and saved countless lives.

There is no evidence that the COVID vaccine is more dangerous or has additional side effects for people with ALS. For people with ALS who are experiencing breathing problems, the protection the COVID vaccine offers can be particularly beneficial.

According to updated guidance in an August 2022 statement, the Centers for Disease Control and Prevention (CDC) notes that most American now have some form of immunity to COVID due to vaccination or natural antibodies in response to COVID infection.

Still, the CDC recommends that individuals understand their risk of severe COVID and take appropriate action, including getting vaccinated or boosted.

Which Type Should People With ALS Get?

There are four types of approved COVID vaccines in the United States:

  • Pfizer
  • Moderna
  • Novavax
  • Johnson & Johnson (recommended only for people who are allergic to ingredients in other vaccines)

The CDC does not specify a particular type of vaccine or booster for people with ALS. However, people with ALS should observe the same caution as the general population about allergies to vaccine ingredients.

People who have been vaccinated and are up-to-date with booster shots, which protect against different COVID variants, are far less likely to have severe COVID, no matter which type of shot they have.

Are There Any Side Effects of Taking the COVID Vaccine?

Some people experience side effects from the COVID vaccine. Side effects are an indication that the vaccine is working.

The symptoms are due to inflammation that occurs when white blood cells, which play an important role in building immunity, gather at the injection site. However, if you don't have side effects, it does not mean that the vaccine isn't working.

Most side effects happen within seven days of getting vaccinated and can last up to about three days. Most are mild and include:

  • Headache
  • Fatigue
  • Chills
  • Fever

A 2021 study reported that more women than men tend to have a headache or fatigue, as do people under 55 years old and people after the second dose. If you've had COVID, you may also be more likely to experience side effects.

Rarely, people develop severe side effects after the COVID vaccine, which include:

  • Myocarditis: Inflammation of the heart muscle, which can be serious
  • Pericarditis: Inflammation of the outer tissue lining the heart, usually resolves on its own
  • Severe allergic reactions
  • Blood clots in those who have the Johnson & Johnson vaccine

At this time, there is no evidence that the COVID vaccines are linked to neurological diseases like ALS, despite some media reports.

A study of nearly 307 million people who received the vaccine between Jan. 1 and June 14, 2021, recorded that 0.1% had "adverse events," which are considered serious side effects. Out of those events, 0.03% were neurological in type.

People with ALS can expect to have some of the same side effects as the general population after taking the vaccine.

Risks of COVID for People With ALS

There isn't a great deal of data about the particular risks of COVID-19 for people with ALS or whether people with ALS might be more susceptible to contracting COVID-19. You should talk with a healthcare provider about what precautions are advisable for you, including vaccination and staying up to date with boosters.

One report of three people with ALS who had non-invasive ventilation and contracted COVID-19 says they recovered their previous respiratory capabilities when they were treated. Another pointed to two people whose disease seemed to progress more rapidly. Few conclusions can be drawn from these reports.

The ALS organization I Am ALS notes, "While there’s currently no evidence that patients with ALS are uniquely sensitive to the virus, individuals with respiratory health issues, chronic medical conditions such as heart disease, diabetes or lung disease, and those who are elderly may be at a higher risk for experiencing COVID-19 severely."

People with weak immune systems are also more vulnerable to severe COVID-19. The CDC strongly recommends that those who are immunosuppressed get the vaccine.

If you are participating in a clinical trial for ALS treatment that requires you to take immunosuppressants, such as a bone marrow transplant trial, talk to those who are coordinating the trial about recommended vaccines and boosters.

A relatively new medication for ALS, Relyvrio (sodium phenylbutyrate and taurursodiol) does not suppress the immune system but can cause upper respiratory tract infection.

What Should People Avoid Before Taking the COVID Vaccine?

The CDC recommends that if you don't take an over-the-counter medication regularly, you should not start it shortly before you get the vaccine. Experts don't know how over-the-counter medications may affect how well the vaccine works.

Most medical screenings, procedures, and other vaccinations will not affect or be affected by a COVID shot. Ask a healthcare provider any specific questions about your conditions or medications.

If you have had an allergic reaction to a previous COVID vaccine, talk to a healthcare provider about which type of vaccine they recommend. If you have other types of allergies, you can still get vaccinated.

You may be able to minimize side effects if you have eaten healthy food, are well hydrated, and have not had alcohol before your COVID vaccination. The CDC does not have specific recommendations for eating or drinking in connection with having the COVID vaccine.

There are no ALS-related recommendations preceding a COVID vaccination, but you should check with a healthcare provider if you have any questions.

What Are the COVID Vaccine's Origins?

The COVID vaccines are not made from live viruses and cannot affect your DNA or give you COVID-19. Most of the ingredients are things you would find in food, like fats, sugars, and salts. They contain no preservatives, nuts, eggs, medications, metal, latex, or animal tissue. They do not contain any manmade structures like nanoproducts or electronic chips.

There are several categories of COVID vaccines that signal your body to make antibodies, but are made using different approaches:

  • Messenger RNA (mRNA) vaccines: Pfizer and Moderna vaccines, made from genetically engineered material
  • Subunit vaccine: Novavax, uses part of the COVID virus to stimulate your immune system
  • Viral vector vaccines: J&J vaccine, made by inserting genetic material from the COVID virus into a different virus that becomes the "vector"

After your body builds antibodies from the vaccine, your cells eliminate the vaccine ingredients.

Where Can You Get the COVID Vaccine?

You can find a COVID vaccine location by going to Vaccines.gov. To find a location near you, enter your ZIP code as instructed. If you do not have a computer or smartphone, there is a number you can call: 1-800-232-0233.

If you have ALS and your mobility is limited, talk to a healthcare provider or have your caregiver contact them about where and how you can get vaccinated or boosted.

When Should You Take the COVID Vaccine?

Experts have found no reason to delay taking the COVID vaccine if you have ALS. As new formulations are issued, you should follow the CDC advice for who should get the new booster and schedule your booster shot accordingly. Bear in mind that it takes two weeks for the vaccine to become fully effective.

For example, the bivalent booster approved for use in September 2022 protected against the original COVID virus and several variants. The CDC recommended getting the bivalent booster if you had not had a COVID shot in the past two months, even if you've already had an earlier form of the booster.

Summary

The COVID vaccines and boosters are considered safe and effective for people with ALS. The shot provides protection against contracting COVID-19 and reduces the chance of getting a severe case. If you have ALS and have not been vaccinated, talk to a healthcare provider about getting the vaccine.

Your risks of side effects are similar to those of the general population. Side effects are generally mild, so assess the risk/benefit with a healthcare provider and follow their recommendation.

A Word From Verywell

ALS is a challenging disease, but new approaches to treatments are in development. Stay as healthy as possible by protecting yourself against COVID-19. If you or someone you care about has ALS, this is one step you can take to ward off additional health issues and breathing difficulties.

17 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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By Nancy LeBrun
In addition to her extensive health and wellness writing, Nancy has written about many general interest topics for publications as diverse as Newsweek, Teen Vogue, abcnews.com, and Craftsmanship Quarterly. She has authored a book about documentary filmmaking, a screenplay about a lost civil rights hero, and ghostwritten several memoirs.