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Narcolepsy and the COVID-19 Vaccine: What We Know

Posted on December 14, 2020
Article written by
Kelly Crumrin

On Friday, December 11, the U.S. Food and Drug Administration (FDA) announced the approval of the first vaccine for the novel coronavirus that causes COVID-19. Several other vaccine candidates are currently being developed and tested, and multiple vaccines may become available in the weeks and months ahead. MyNarcolepsyTeam will reach out to specialists in the days to come to find out what this means for people with narcolepsy.

What MyNarcolepsyTeam Members Are Saying About COVID-19 Vaccines

Members of MyNarcolepsyTeam share a variety of viewpoints regarding a COVID-19 vaccine. Some are eager to receive the vaccine as soon as it becomes available. Others expressed more caution. “Are we considered high-risk for the vaccine due to our medications?” asked one member.

Your doctor knows all the details of your narcolepsy, the treatments you take, and other aspects of your health history. This makes them the best source for guidance as you weigh the benefits and risks associated with the vaccine. Many MyNarcolepsyTeam members are already talking to their doctors about COVID-19 vaccines.

What Is Known About COVID-19 Vaccines?

The Advisory Committee on Immunization Practices (ACIP) is reviewing clinical trial data on the COVID-19 vaccine to determine whether to recommend it and, if so, who should take it. The ACIP will consider factors like age, underlying medical conditions, race, and ethnicity. With vaccines on the way, people living with narcolepsy will need accurate information to make decisions about being vaccinated against the coronavirus.

Here is what is known so far:

  • Most COVID-19 vaccines in development require two doses given 21 or 28 days apart. The first approved vaccine, manufactured by Pfizer-BioNTech, requires a second dose 21 days after the first.
  • Side effects, which may be worse after the second dose, have been mostly mild or moderate. They include fatigue, muscle and joint soreness, and pain at the injection site.
  • Vaccines are being tested in thousands of volunteers to prove their safety and effectiveness before gaining approval.
  • Additional safety systems are being put into place to continue monitoring for side effects as vaccines enter public use.
  • Vaccine doses will be free for American citizens, but some health care providers may charge for administering them.
  • The Centers for Disease Control and Prevention (CDC) recommend health care personnel and residents at long-term care facilities receive access to vaccines first.
  • If supplies are limited, older adults and people with specific underlying medical conditions will be considered for early access.
  • The federal government is developing a centralized system to distribute and track COVID-19 vaccines.

What Do People With Narcolepsy Need To Find Out?

MyNarcolepsyTeam knows there are many questions that remain unanswered. We will be reaching out to narcolepsy specialists to find out the following:

  • Will COVID-19 vaccines be safe for people with narcolepsy?
  • If there are multiple types of COVID-19 vaccines, will they all be equally safe and effective?
  • Will the vaccines be safe and effective for those taking narcolepsy medications?
  • Will people with narcolepsy be given priority for vaccinations?
  • What is the earliest you could get access to a vaccine?
  • Is there any benefit to waiting until later to get a vaccine?

Over the weeks to come, MyNarcolepsyTeam will provide updates as we learn more about the safety and effectiveness of vaccines for people with narcolepsy, including those treating their narcolepsy with medications.

What questions do you have about COVID-19 vaccines? Share them in the comments below.

All updates must be accompanied by text or a picture.
Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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