Vaccinated and Immunosuppressed

By Anita Williams

3 min read

After more than one year of actual time passing and what seemed like a couple more years, I was eligible for the COVID-19 vaccine. I received the newsletter from the neurology department telling me that it was safe and effective. When my time came, I loaded into my car and headed out to one of the mobile sites set up by STRIDE Community Health Centers. From home and back it was less than one hour for my first shot.

A sigh of relief after my COVID-19 vaccine

A few weeks later and I was happy as a clam with my Moderna vaccine. It was created by a Black woman and partially financed by Dolly Parton. At home, my chest puffed out a little bit. I was safe from a COVID-19 death according to science. I could still get ill, but my chances of being hospitalized and on a ventilator were reduced significantly.¹ As a person living with MS, who also suffers from other comorbidities including asthma, this was more than good news. It was a shot of confidence that I would be able to avoid being one of the nearly 610,000 (as of this writing) poor souls in the United States that we have lost to this pandemic. I was not going to run out without my mask! However, I was feeling safer.

Side effects from the second dose

Much to my surprise, the second COVID-19 vaccine dose came with the dreaded side effects. I was woken up by nausea and a bit of diarrhea along with chills, body aches, and a headache. I have not had a cold or flu since 1997, with the flu shot, so I was plenty confused about what was going on. It took me about half a day before I figured out that I was having a reaction to the Moderna shot. I thought my strong second response was supposed to be a good sign that my body's reaction meant I was going to be safe. Well, that is not true. How your body reacts outwardly is not an indication of how well you are immunized.² This information came in handy when I learned that being immunosuppressed means that I may not be as safe as I thought.

Immunocompromised excluded from clinical studies

During the vaccine trials for all three COVID-19 vaccines, people who were immunosuppressed were purposefully excluded. In the rush to create a vaccine, pharmaceutical companies chose to eliminate various subgroups and those of us with compromised immune systems were part of that. The danger posed by the clinical trials was deemed too high. People like me were taking the vaccine on the assumption that it may work for us. However, the common saying about what happens when “you assume” comes into play.

A lower antibody response for those with autoimmune conditions

What is happening in the real world is not always what we want. Many people are in the same situation. “Washington University’s Alfred Kim said that although the majority of patients with autoimmune conditions who were studied are mounting a healthy antibody response, about 15 percent had very blunted or undetectable antibody responses.”³ It appears that those of us on B-cell-depleting medications are most affected. We are talking about drugs such as rituximab or ocrelizumab that are used to treat multiple sclerosis.³

Questioning my level of protection

The initial excitement and relief I felt from getting vaccinated has been severly blunted. I no longer feel safer from the scourge of COVID-19. It was not like I felt invincible in the first place. I just felt like I did not have to live under a potential death sentence every time I left the house. The vaccine offered me peace of mind. Well, that was short-lived.

Living with MS and staying protected

There are now talks of booster shots, but how does that work for us if we are not fully immunized? Right now neither Pfizer nor Moderna has show interest in doing clinical work to see how people like us with multiple sclerosis react to their vaccines and how well they protect us. For now, I am following medical guidance. “Many physicians urge immunocompromised patients to continue to practice social distancing and take other precautions.”³

If you see me out, you will see me wearing a mask. I may be vaccinated. I may have had a reaction after my second shot. I will be continuing to protect myself until I get better information. I danced too soon. I should have waited until the music started for me and my fellow people living with MS.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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suek Member
The MS Society, in the US and abroad, have provided ample advice concerning the vaccines as they pertain to MS patients. Certain DMTs may make the vaccine less effective due to how they function, for example Ocrevus, Lemtrada, etc… However, timing is everything. Worked properly into your infusion schedule (if this applies to you) there will be protection against Covid. Your neurologists can advise you as to any concerns or special directions. This article is misleading and does not apply to everyone. I had both Moderna vaccines earlier this year. No side effects what so ever beside mild short term fatigue as is common with all vaccines. Boosters might be necessary with some of the vaccines to provide continued immunity as is true with most vaccines.
Tamara K Sellman Moderator
Thank you, <inline-mention username="suek" user-id="4089481"/>, for calling out the timing and type of DMT as major factors when making a decision to get the COVID-19 vaccine. These are truly important to consider in a dialog with one's neurologist. Also, Anita's piece *is* a personal experience and opinion and it doesn't reflect the reality of a lot of people in my circles who have MS who also received a vaccine. This is also my opinion: I think it can be very difficult to blame vaccine side effects, which plenty of healthy people have experienced, for causing MS flares. Yes, the vaccines were deemed then (and our deemed now) to be safe for people with autoimmune conditions to use. This doesn't mean vaccines don't come with risks or side effects, and having side effects or even a flareup does not change the fact that these vaccines are safe (if you understand what researchers consider as a definition for safe). As for people with MS etc being purposefully left out of the study, I don't think there is anything sinister about the fact that we don't know how MSers might react to the vaccine. Most people in specific chronic illness categories were not specifically trialed because of the need for a quick turnaround on research because of the high contagion speed of COVID-19 and its emerging variants. To be more inclusive would add so much more time to the process that we would likely still be waiting for vaccines had it been approached in that way. Sometimes the fast track is a little more risky, and then you weigh the risk-benefit ratio for yourself. I'm sorry for those who feel their vaccines have worsened their MS, but I do hesitate to make that link. Correlation, as they often say, does not imply causation. I have direct ties to MS researchers who have specifically tested people with MS in clinical trials since last December (I was invited to take part, as well), and so far, the evidence supports the safety narrative. I don't believe there is any conspiracy here to mislead people with MS regarding the safety of the vaccine. I think it's just tough times calling for quick reactions that aren't as precise as they could be due to the urgency of the situation. It's not a perfect world, but I think our doctors, scientists, and researchers are truly doing the best they can. Again, that's my opinion, but I like to think that having the privilege of knowing some of the people behind the scenes and getting information directly from research sources counts for something. ~Tamara, community advocate
suek Member
Great post! What people seem to not understand is that the vaccine (like all vaccines) may cause mild reactions for some as it builds new immunity. However, this is short term. Granted there will always be a handful that will have more serious side effects, usually due to underlying heart conditions, etc…. But, the risks are far outweighed by the benefits. Initially researchers believed that Covid was just a bad respiratory virus. Not so. It is actually a very serious inflammatory disease. Lungs studied postmortem showed it was not fluid nor infection that was cutting off patients airways. The lungs were so swollen, inflamed and damaged breathing was completely blocked. The only hope for many has been lung transplants. This holds true for hearts, kidneys, livers, and so forth. The damage found in the brain and CNS is strikingly similar to MS. This can occur whether one has a critical case or is asymptomatic. Countless people may have had Covid without knowing it. If you already have a inflammatory disease such as MS, Covid will indeed worsen it. The vaccine will not. I agree with you. It most definitely is
cardgal18 Member
Anita, I can relate to your story in so many ways. I too had feelings of impending doom if I got COVID, so I was a hermit for over a year. Had to have my appendix out in December made it even scarier. Since I am 69, I was in the first group to get the vaccine which I did. I had the Pfizer and had a small reaction to the second dose. My husband and I are both immunocompromised since we both had lymphoma ( plus my Secondary progressive). He was in a clinical trial where he received ofatumumab ( now Kesimpta) and was able to achieve complete remission. I only had radiation since mine was localized and I’m still in remission. I had four doses of Ocrevus which I felt were helping. I asked to have IGG levels checked and they are now too low to receive any more. The Leukemia and Lymphoma Society is providing 3000 of us with a protein spike test to see how our immune systems have responded to the vaccine. It consists of two blood tests, one which shows if you have had or been exposed to COVID. We both came up negative for that one. The other a protein spike test shows your reaction to the vaccine. Some in our online support group got a reading of >250. Many of them had had Rituxan for their lymphoma. My first test was 62, just a bit disappointing, but my husbands was 7. We were asked to be tested again a couple of weeks ago, four months after the first test. My husbands had dropped to 6, mine to 24. Very disappointing even though no one knows exactly what those numbers mean yet. I felt invincible after I was vaccinated. Now, not so much, but we have both decided to set those fears aside as our years left are dwindling and we need to live our lives now. I would do it all again, I think the vaccines are effective and I hope those who are hesitant change their minds. We all need to try to enjoy our lives, sometimes very hard with MS and many other health conditions. I won’t say good luck, but try to be optimistic.
1. Lori Foster Member
 Hi <inline-mention username="cardgal18" user-id="4051386"/>. It must have been hard to see those numbers, but let's how those numbers don't mean as much as they think. I hope enough people around you are vaccinated that you are even more protected. Sending lots of hugs your way! - Lori (Team Member)
lrayholly Member
Perhaps I’m misunderstanding some of the commentators but I think some of you are missing the point that the author is making. Although she mentions her reactions as it related to her sense of security, I don’t believe she’s complaining about them at all - simply acknowledging. I think the real point is the same concerns that I have. I would still have gotten the Moderna vaccine as well as my 2 years of Ocrevus treatments, but I would not have assumed my safe status to be like everyone else. Turns out it was a false sense of security for immunosuppressed patients. I finished my second vaccine on February 20. On May 13 this article was published, <a href='https://www.neurologylive.com/view/b-cell-depletion-factor-sars-cov-2-antibody-response-multiple-sclerosis' target='_blank' rel='noopener noreferrer ugc'>https://www.neurologylive.com/view/b-cell-depletion-factor-sars-cov-2-antibody-response-multiple-sclerosis</a>, which notes a study in Israel that finds the seriously decreased efficacy of the vaccine in MS patients who are significantly immunocompromised. This is further discussed in this abstract by the Consortium of MS Centers published on June 1. https://link.springer.com/article/10.1007/s12325-021-01761-3 My point is only that the author is providing a real service by publishing her thoughts on the subject. I’ve done some research and the fear is real for her and for me. I’m a 66 year old PPMS patient and former Ocrevus recipient with multiple comorbidities. I intend to keep social distancing, wearing my masks, and constantly washing my hands for the foreseeable future, because I’ve got a lot more living to do!
1. Jon Foster Member
 <inline-mention username="lrayholly" user-id="4036564"/> update: I also received my third shot of Moderna; however, I have not changed my behavior. I remain mostly isolated and will mask up (N95) if I must venture into society.
2. Lisa Emrich Moderator & Contributor
 <inline-mention username="Jon Foster" user-id="4007461"/>, You are not alone. I use Rituxan and I continue to mask up and avoid close contact with others. Hopefully things will improve with our booster shots. Best wishes, Lisa, MS Team Member
f5hwo4 Member
My husband and I have had our Pfizer shots for three months, both of us had a sore arm. I am not on any treatment and he is diabetic, we are both retired. We don't wear a mask unless we have to. I was having trouble with mask rash and it is too hot in Kansas to wear one in the summer. We plan to get a booster shot when they are available. Fortunately we live in a area with a fairly low COVID number. This small town had a few cases at the beginning from people who had been on cruise. They hadn't been in contact with anyone so it was easy to stop the spread. I am afraid the spread of deadly viruses may become part of our everyday life. We have been remodeling our house to be a more comfortable place to spend time. We finished the basement and put a theater room/bar in it and added a new garage, more work/hobby space for my husband. Potter
1. Lori Foster Member
 Hi Potter (<inline-mention username="f5hwo4" user-id="3977349"/> )! I love that you are remodeling your house to be an oasis of sorts. If ever you have to be stuck at home, you might as well make it awesome! I hope your vaccines were effective and that the numbers remain low in your community. Best of all wishes! - Lori (Team Member)

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