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.
About the Author
Comments
Aditi
I am also very very confused ,I have NMOSD ,I am not taking any immunosuppressive medicine, I am on Natural therapy, trying to cure myself naturally. Two months back I was corona positive ,had very very mild symptoms ,headache foe a day and smell loss for two days that's it.Here is Dubai Pfizer is available, all my friends have taken their first shot , but I am in dilemma, I am not very keen to take the vaccine as I fear relapse and I think strong immunity can fight coronavirus then why to take risk of injecting something that may cause relapse.On other hand my husbands travelling job and travelling rusk says that would be better if I take a shot. I don't know what I am gonna do , will definitely post here if I decide to take the shot.
Mileidys Almaguer Iniguez
Hi. I have my neurologist appointment next month. I will discuss abouth the vaccine again with him. You and I are at risk because my job in the medical field and you because your husband job, which involves travelling. I am seeing now that more and more people are getting vaccinated. Here in Massachusetss everything is fulled booked to get the vaccine. I will post it here if I get the vaccine and if I get any side effects.
Sheila Brokenshire
I am as fearful and confused as many of you. I am in a bit of a different situation. In 2019 an optio/neurologist Dx me with NMOSD. I started the therapy of Rituxan and had terribly side effects. So this was stopped. I had been on prednisone for over 9 months at 80mg and felt horrible. I was falling down for no reason, muscle loss, weakness and in general felt like I was going to die. They Dx me with prednisone induced myopathy and the meds was stopped. I had doctors arguing over whether or not I truly had NMOSD for there were no spinal lesions. I went to Cleveland Clinic for a second opinion and still do not know if I have NMOSD, MS, or something else. No one agrees with each other. Oh an on my medical record it has a host of Dx with the two boggles being NMOSD, and MS. When I question the docs about this no one will say I have or do not. They skirt around the question. Recently they found an M protein in my blood which is usually seen in patients with blood cancers. The cause of mine: Rituxan. This has all been going on during the pandemic. So I too have done my research on this vaccine. I have been a nurse for 26 years. I have never seen the FDA come put with any Med or vaccine this quickly. My concerns are they don’t know enough about the effectiveness, or long term issues associated with ot on healthy people. So I am skeptical that any of their statements to the rare disease patients has any validity. My docs are pushing me to receive this vaccine as my immunoglobulins are very low, (although they are doing for that). Physicians in my opinion are trained to push vaccines as they tend to help the majority of people that receive them. I believe Covid is being pushed to try to concern the number of cases seen daily and the overall death count. Up to this point nothing else has worked. Again the hope is to get the virus under control, prevent further cases, ensure no further collapse with the countries financial issues, provide a safe environment for all business to be open to prevent further closings and to improve the overall economy, and lastly to open this country back up. So I am having a hard time wanting to be a lab rat if you will do they can safety say with data that any rare disease patient were not harmed or died. Now that is my opinion only but I wanted to share my thoughts and frustrations.
Mileidys Almaguer Iniguez
Thank you so much for sharing your opinion. I am so sorry for everything you went through. I am in Rituxan and I understand exactly what you are saying. I was in Prednisone at the beginning of my diagnosis. My face was swollen and full of weird acne. I also had a horrible time trying to get diagnosed. I was misdiagnosed with M.S for two years until I got extremely sick and finally, I go the right diagnosis. You must get a diagnosis because the M.S medication makes the NMO condition worse. This is what happened to me.
I was scared with the blood protein that they found in your blood related to Rituxan and I am in Rituxan since 2012. Today after I read your comment I had a virtual appointment with my doctor and I asked about this protein. He told me they were checking and I do not have it.
My immunoglobulins were low like yours. Now are just right because I received an immune globulin infusion monthly. Otherwise, the Rituxan would have kept my numbers low.
I wish all the Coranvirus were just a bad dream but is not. Coronavirus vaccine is a mystery until time pass. However, I am leaning more and more to get the vaccine. Although, I still have my fears. I also think about the uncertainty of the long-term associated issues.
I am sharing with you this video (https://www.youtube.com/watch?v=hkFf_HmGaus) of my doctor talking about the Coronavirus vaccines and his research about NMO, MS, and MGO (myelin oligodendrocyte glycoprotein). All these diseases are confused very often. Maybe it can help you.
Robyn Sindrey
I too am scared out of my mind with a relapse. I was diagnosed with NMO in September of 2020. It started with excruciating nerve pain in my right leg (April 2020) to numbness and a dead feeling in my right arm (June 2020), to full blindness in my right eye (July 2020). My symptoms came on quick. A plasma exchange in September, high dose prednisone (50mg) a day, and recently started Riximyo to suppress my immune system helped with the leg and arm, but my vision in my right eye is permanent. So I’m am struggling with what to do. My fear is that I will lose my vision in my left eye if I trigger my immune system.
Mileidys Almaguer Iniguez
Hello, at the beginning when they diagnosed me I had your same symptoms and treatment. Maybe my column about the new approved medications in the United States can help youhttp://neuromyelitisnews.com/columns/2021/01/14/fda-approved-nmo-medications-light-horizon/
Where do you live?
Gizella
I was diagnosed with NMOSD in 2017 and have been on imuran (azathioprine) with good results so far. No reoccurence. I was recently vaccinated with 2-dose Pfizer with no side effects except for a slight headache after the 2nd dose.
I heard that, even with the vaccine, I am still at risk because of my immunotherapy.
Given the risk, I think that I should continue to wear a mask outside the house, even when I meet with those who have been vaccinated. What do you think?
Mileidys Almaguer Iniguez
I found information about Azathioprineand Covid-19 in the wedsite of Guthy Foundation (a non-profit organization of NMO). The link for this site is https://guthyjacksonfoundation.org/nmosd-covid-19-faqs/vaccination/
I found this information under the question: Do immunosuppressing drugs used in NMOSD lower effectiveness of COVID-19 vaccines?
(This is the answer). Azathioprine appears to have only a modest impact on immune responses to vaccines, allowing a good chance for protective immunity to COVID-19 disease, particularly severe disease or death. As this drug is often taken daily, it is best to be vaccinated as soon as possible with no pause in treatment. Please consult your healthcare provider to select the best vaccination schedule and COVID-19 vaccine type for you.
Like you, I also got the 2-dose Pfizer with minors side effects such as chills. I About your question: Given the risk, continue to wear a mask outside the house, even when I meet with those who have been vaccinated. What do you think?
My answer: It depends on the setting:
In a family gathering such as week-ends barbecue (outside), I do not wear a mask.
In big cities like Boston, a city close to where I live, yes and no. In Massachusetts is legal now not to wear a mask outdoors if people can maintain 6 feet from other people. I would wear a mask outside in crowded streets where people walk very close to me, but not in streets where there is nobody very close by.
At work, I wear my mask always. In my case because of the nature of what I do: I am a medical interpreter. Very often I am in very small rooms during medical procedures with a few people (all of them medical personal who most of them have been vaccinated).
Below is what CDC says about mask use (https://www.cdc.gov/coronavirus/2019-ncov/vaccines/vaccine-benefits.html):
Once you are fully vaccinated, you can start doing more
After you are fully vaccinated for COVID-19, you may be able to start doing some things that you stopped doing because of the pandemic. For example, you can gather indoors without masks with other people who are fully vaccinated.
We are still learning how vaccines will affect the spread of COVID-19. Until we know more about how vaccines will affect the spread of COVID-19, people who are fully vaccinated against COVID-19 should keep taking precautions in public places like wearing a mask, staying 6 feet apart from others, avoiding crowds and poorly ventilated spaces, and washing your hands often.
People are not considered fully vaccinated until two weeks after their second dose of the Pfizer-BioNTech or Moderna COVID-19 vaccine, or two weeks after a single-dose Johnson & Johnson’s Janssen COVID-19 vaccine. You should keep using all the tools available to protect yourself and others until you are fully vaccinated.
I hope this information help you ( :
Bobbi -Jo
I also have nmo ,I was diagnosed with it in 2015......scary thing .was in the hospital and actually thought i was going to die that's how awful I felt 😔was on different medications and now for the last 2years get infusions every 6months twice.i am really nervous about the whole vaccine thing too......I do not want to have a relapse and end up back in the hospital. It really sucks to have the stress of this on my mind everyday 😟
Mileidys Almaguer Iniguez
Hello:
I know that feeling of believing that I going to die. I am so sorry you went through that. About the vaccine, after being scared for a while I got vaccinated last month. My side effects were chills and tiredness after the second dose. Now I am fine. I have infusions every 6 months like you.
Tarn
Hello Mileidys,
I was diagnosed with NMOSD in 2013. After reading all comments above,
Can I conclude that Pfizer (mRNA vaccine) is safe for NMOSD patients.
We can get the COVID vaccine without relapse, right?
Do you have any data about " How many NMOSD patients who get COVID Vaccine and their side effect"
However, Congratulations to you to be safe after vaccination!
Mileidys Almaguer Iniguez
I am a patient like you. Nobody knows if the vaccine will protect you one hundred percent from having a relapse. I was pretty clear about that. I shared here the information that I found about the vaccine. Like many of us, I had my doubts, and I expressed them. Getting the vaccine is a personal decision. I had mine, and I am fine. However, everybody is different. I shared in my column my experience. I am not telling anybody to go and get theirs. If this is what you understood, I am so sorry you interpreted the information wrong. By the way, where did you find that I said I have statistical data?
Gizella
I just read this update, July 2021, and am concerned again. Personally, I still avoid crowds and always wear my mask when I leave my house.
https://apple.news/AJ9yyUcAfSXGMvrL-mQAaAA
Mileidys Almaguer Iniguez
I agree with Everybody who wants to take extra precautions if they feel safer doing that.