Vaccinated and Immunosuppressed
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.
Were you misdiagnosed with something else before receiving a MS diagnosis?