Should I Get a COVID-19 Vaccine as an NMO Patient?
I have conflicting emotions about the COVID-19 vaccine. I feel dominated by fear, even though I know this vaccine will lower my risk of contracting the coronavirus.
On one hand, I know how important it is to be protected against COVID-19. It’s especially important for me for two reasons:
- I am immunocompromised because my Rituxan (rituximab) infusions deplete my B-cells. (People who are immunocompromised are at a higher risk of becoming severely sick from the virus.)
- I am a medical interpreter. Most of my work takes place at hospitals and doctor’s offices. These locations increase my risk of coming into contact with someone infected with COVID-19.
On the other hand, I have never reacted very positively to treatments. None of the treatments doctors initially tried for my neuromyelitis optica (NMO) attacks worked. A plasma exchange caused tremors, fast heart palpitations, and high blood pressure. Intravenous steroids caused seizures. I have been receiving Rituxan infusions since 2012; as a result, I now need monthly immune globulin infusions to compensate for the B-cell depletion. My point is that I’m a little bit nervous to get the COVID-19 vaccine based on how negatively my body has reacted to different treatments in the past.
I cannot base my decision on fear, and I need to hear what the experts have to say. Once I gather enough information, I will evaluate if there are more risks than benefits for me particularly. Every rare disease and every individual is different. Each person’s reaction to a treatment or vaccine will vary.
What the experts say
According to the Centers for Disease Control and Prevention (CDC), three COVID-19 vaccines are currently authorized in the United States: the Pfizer-BioNTech mRNA vaccine, the Moderna mRNA vaccine, and Johnson & Johnson’s Janssen vaccine.
Both the CDC and U.S. Food and Drug Administration (FDA) say the mRNA vaccines pose little risk to rare disease patients. The commissioner of the FDA said that it is difficult to know whether those vaccines are as effective and safe for people with rare diseases because there aren’t enough people with those diseases to draw any conclusions. However, the FDA does not have any evidence that the two mRNA vaccines will harm rare disease patients.
There is not as much information about the Janssen vaccine since it isn’t mRNA and was only recently approved for use.
Experts advise patients to talk to their health providers and assess their particular health conditions. Each person must weigh the risks and benefits.
I follow the advice of my neuroimmunologist, Dr. Michael Levy. He is excellent, knowledgeable, prestigious, and experienced. Levy advised in a statement that if a vaccine triggered an NMO relapse in the past, you should not get a COVID-19 vaccine.
He also stated that like with any vaccine, it is safer to get the COVID-19 vaccine while on NMO therapy, though its efficacy may be affected.
Ultimately, he recommended that NMO patients get the vaccine if they have the chance to do so.
What I decided
It looks like the COVID-19 vaccine is not a risk for most NMO patients, though my fearful side tried to justify why I should not get it. The following thoughts came to mind: The FDA said there are not enough people with certain rare diseases to know for sure that the vaccine will be safe for them. Maybe I don’t need the vaccine because I have been very careful. I always wear my mask, I wash my hands and use hand sanitizer all the time, I keep a social distance, and I have not caught a single cold since January 2019. Why should I take a risk?
My brave side also reminded me that the FDA does not believe the vaccine will cause harm, based on the information they have right now. So, I have nothing to lose. My brave side wants to follow my doctor’s advice, because I trust and respect him immensely, and go get the vaccine.
The truth is that I have not decided yet. Just the thought that something could cause me to relapse again makes me feel terrified.
Note: Neuromyelitis News 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. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.