Over 230 million Americans have been fully vaccinated against SARS-CoV-2, roughly 69 percent of the United States population. Mass COVID-19 vaccinations were seen as a critical step in reopening hard-hit local economies and continue to be seen as essential for maintaining whatever passes for normalcy in our post-COVID world.
But lost in the endless lectures from community leaders and pushes from politicians for vaccinations was any sort of consideration about the safety and efficacy of the vaccines for those of us with underlying medical conditions. Quite the contrary, health officials put us first in line for the vaccines.
The SARS-CoV-2 vaccines were tested in July 2020 on healthy patients and distributed broadly starting in December 2020. While the vaccine has been heralded as safe, even healthy patients have missed work, fallen ill, and come down with rashes that resemble signature symptoms of dermatomyositis, lupus, and other autoimmune diseases. So what about those of us with malfunctioning immune systems?
Do the risks outweigh the benefits?
To no one’s surprise, COVID-19 czar Anthony Fauci told attendees at a December 2020 hematology conference to urge immunosuppressed patients to get the COVID-19 vaccine. Attendees actually doing research on COVID-19 in immunocompromised populations agreed with Fauci, but admitted at that time there was not yet data available to back up Fauci’s recommendation.
Early studies of the SARS-CoV-2 vaccine understandably excluded immunosuppressed patients. Later studies focus on HIV-infected individuals, patients being treated with stem cells, organ transplant recipients, and leukemia patients. Respected British medical journal The Lancet, to name one, published a Swedish study of immunocompromised patients, stating the results showed the Pfizer vaccine to be reasonably safe. However, autoimmune patients were not included in the study.
The American Association for Neuromuscular & Electrodiagnostic Medicine discusses in detail the pros and cons of vaccines for people suffering from neuromuscular diseases. Because these types of diseases often affect muscles involved in breathing, they encourage those afflicted who are not taking immunosuppressants to obtain the vaccine.
However, for immunosuppressed patients with neuromuscular diseases, the researchers advise caution. While the benefits of the vaccine may outweigh the risks, studies of mRNA vaccines on immunosuppressed groups are scarce.
Other public-health authorities and doctors all over the world have also advised immunosuppressed patients to get the vaccine, claiming the risks outweigh the benefits. Following the American College of Rheumatology guidance, my own doctors also advised me to get the SARS-CoV-2 vaccine, stating their other autoimmune patients were able to do so safely.
But few of these doctors and researchers have even looked into the most important question: Would the vaccine actually help me?
Is the vaccine effective for the immunosuppressed?
A research group at Johns Hopkins attempted to answer that question. They found only 17 percent of immunosuppressed patients mounted antibodies detectable to SARS-CoV-2, compared to 100 percent of patients with healthy, functioning immune systems. For patients taking steroid-sparing agents, like methotrexate and azathioprine, the researchers could only detect antibody responses in 8.75 percent.
The Lancet study cited earlier also showed significantly lower seroconversion rates in organ transplant patients taking immunosuppressants like mycophenolate mofetil and azathioprine. Only 43 percent developed antibodies for identifying and combating SARS-CoV-2.
Even in the general population, a vaccine is not 100 percent effective; in those with weakened immune systems, the response will be limited.
Spyridoula Vasileiou, PhD, Baylor College of Medicine
A study published in October 2022, 22 months after the vaccine was made publicly available for populations most at risk of contracting COVID-19, also found the immune systems of immunosuppressed patients responded poorly to the SARS-CoV-2 mRNA vaccines.
When I bring up these studies to my doctors, they look at me somewhat blankly. Though none of them is an uneducated sheep simply following the herd, I imagine each of them feel pressure from various government agencies, lawyers, medical boards, and insurance companies to follow the prescribed guidelines. And who can blame them? Even among specialists, dermatomyositis is even less understood than novel coronaviruses.
Dermatomyositis and COVID-19
When the vaccine was first released, the general consensus, based on sound medical logic, was that any patient taking an immunosuppressant would obviously be at greater risk. Not for only were people with malfunctioning immune systems more likely to contract COVID-19, but many expected them to suffering more severe symptoms and be more likely to die or see long-term damage to their bodies.
In spring of 2020, this made sense to me, too. I feared if I contracted the disease, it would be nearly impossible to fight off. I did not leave my house for three weeks, despite objecting to mass shutdowns aimed at protecting people like me.
But then came Donald Trump’s infamous Tweets about hydroxychloroquine, citing early, incomplete evidence that the drug was effective in vitro (specifically in monkey kidneys cells) in blocking infection. Then doctors in India started prescribing it as a prophylactic. Months went by with me dodging COVID as I adapted to the pandemic world so I could have some semblance of a social life and maintain muscle mass. As a long-time user of the drug, even then, I started to wonder if hydroxychloroquine truly did help prevent COVID-19 infection.
More sloppy research came to light, and discussions of the efficacy of hydroxychloroquine in preventing COVID-19 to this day remain politicized. The World Health Organization does not recommend it. The Lancet says it never worked in clinical settings. As late as August 2021, the American Journal of Medicine wrote the evidence is still incomplete but interestingly concluded the antimalarial has no clinical benefit.
Hydroxychloroquine prophylaxis or not, I, the unvaccinated immunosuppressed dermatomyositis patient who went to gym, the store, even restaurants and bars, had still not acquired COVID-19. This, of course, ran contrary to most medical and scientific reasoning.
When I finally did acquire COVID-19 over Thanksgiving 2021, it was the tail end of the Delta variant and the beginning of Omicron. Yet, I fought off the virus relatively unscathed, save for my poor sense of smell.
So what the hell was going on? Was my immune system just destroying everything in its path, from Alpha to Omicron, including me?
Imperfect immune systems and the insanity of bureaucrats
Twelve seasons of House, MD, four rheumatologists, three dermatologists, two stints writing proposals for the several eminent immunologists, and a drug trial later, I am not convinced humanity understands infectious diseases and our own immune systems nearly as well as experts advertise.
COVID-19 alone proved that. The world’s doctors, researchers, bureaucrats, and lab rats rushed to find solutions and cures for COVID only for leading authorities to lose credibility amid rash proclamations that routinely had to be reversed.
Twice, the federal government was wrong about masks. An Arizona Home Depot was out of anything resembling a facial covering as early as January 2020. Amid the sellouts, U.S. Surgeon General Jerome Adams told people via Twitter to stop buying masks, stating, “They are NOT effective in preventing general public from catching coronavirus.” The CDC similarly did not recommend facial coverings because “the virus was not spreading in the community.” In April, they backtracked on their original position. By June 2020, they persuaded governors to fine or jail anyone caught unmasked in public.
The CDC later joined the chorus of overqualified morons who blamed anti-maskers for the summer spikes in COVID cases throughout the U.S. Sunbelt only to realize the American and European northerners would suffer their own Armageddon six months later. Winter was coming, and November 2020 to March 2021 saw the highest case counts of the entire pandemic—even with mask mandates, mass shutdowns, and the beginning of vaccine distribution.
The FDA was no better. Early in the pandemic, they issued emergency authorizations for doctors and pharmacists to treat COVID-19 with hydroxychloroquine, causing the nation to nearly run out of one of two drugs keeping me alive. Months later, these same bureaucrats completely reversed their proclamation.
Then came the U.S. government’s most incessant, most obnoxious, most overbearing fear campaign since World War II: Get vaccinated or die.
While the vaccine was indeed a scientific and political breakthrough and absolutely necessary to ending the socioeconomic chaos, badgering individuals to shove a barely tested substance into their bodies without considering the consequences revealed the ineptitude of the very agencies who allegedly exist to prevent these sorts of issues.
Doctors started seeing dangerous swelling and inflammation in the hearts of newly vaccinated, otherwise perfectly healthy men aged 18-29.
Immunologists in Germany observed five times as many new-onset dermatomyositis cases at their clinic in 2021 compared to the previous two years. They attribute the uptick in an otherwise extremely rare disease to both the SARS-CoV-2 vaccinations and virus itself. Saudi Arabian doctors also noted the phenomenon.
Pakistani doctors reported similar rises in rheumatoid arthritis following COVID-19. My own rheumatology clinic also saw increases in autoimmune cases following mass vaccinations.
Other data about immunocompromised individuals and COVID-19 also emerged. The Johns Hopkins group referenced above found that immunosuppressed organ transplant patients were not more likely to die from COVID-19, as commonly thought when the pandemic began.
People who already had dermatomyositis when they contracted COVID-19 exhibited better outcomes than the general population.
More fascinatingly, patients who already had dermatomyositis when they contracted COVID-19 actually exhibited better outcomes than the general population—lower severity, lower death and hospitalization rates. With the exception of those with lung involvement, in general, dermatomyositis seemed to be a protective factor against COVID-19.
These findings mirror my own experience with COVID-19. My fever and difficulty breathing barely lasted 36 hours. The worst of my symptoms was my loss of smell and taste.
Vaccinations and dermatomyositis patients
Given the research, mRNA vaccine safety does not seem to be more of a concern for dermatomyositis patients than other groups. However, for those taking the most effective dermatomyositis drugs—azathioprine and mycophenolate mofetil—roughly 1 in 3 will develop the antibodies needed to truly be called vaccinated.
The mRNA-based SARS-CoV-2 vaccine seems to be just as safe for dermatomyositis patients as it is for those with properly functioning immune systems.
Dermatomyositis patients, like all patients, should talk to their doctors before deciding whether or not to be vaccinated. For me, because I take azathioprine, the risks of further altering my immune system outweigh the benefits of a vaccine unlikely to help.
But for dermatomyositis patients, there is only a 1 in 3 chance the vaccine will work.