Image credit: Katie L. Flanagan, Emma Best, Nigel W. Crawford, Michelle Giles, Archana Koirala, Kristine Macartney, Fiona Russell, Benjamin W. Teh, and Sophie CH Wen, on behalf of the Australasian Society for Infectious Diseases (ASID) Vaccination Special Interest group (VACSIG). Used under a CC 4.0 license. The caption under this picture states: "This figure illustrates the different vaccine approaches being taken for the design of human SARS-CoV-2 vaccines".
Different countries have different protocols for approving drugs for use in the general population. Sometimes approval comes with caveats for specific segments of the population. Some of the caveats that concern people with autoimmune diseases may be under appreciated. This is true of both therapeutics (they treat diseases) and vaccines (they prevent diseases). I have been diagnosed with a couple of autoimmune diseases and have found that doctors either are not aware of the special concerns, or do not share these concerns with me when making recommendations, especially recommendations for vaccines. So, in this blog I will go through some of the recent literature about the safety/efficacy of various vaccines, and vaccine types.
Antibodies Binding to DNA in Systemic Lupus, an Autoimmune Disease
Image credit: Simon Caulton. Used under a CC 3.0 license. The caption under this illustration reads: "Antibody binding to DNA." It is this antibody binding that is the hallmark of autoimmune diseases. The presence of autoantibodies causes inflammation, which leads to symptoms of an autoimmune disease.
Stricter Rules for Vaccines as a Class of Drugs
Polk State School For the Feeble Minded Where Jonas Salk Tested the Polio Vaccine on Children
Image credit: National Park Service. Public domain. The disabled children at this school received the vaccines in 1952, two years before the full field test had taken place.
The recent pause in administering two COVID 19 vaccines, AstroZenica and J&J, highlights the strict safety standards to which vaccines are held today. These standards are more stringent than those applied to therapeutic drugs. This is because, as a statement by the United States Centers for Disease Control explains:
A higher standard of safety is generally expected of vaccines than of other medical interventions because, in contrast to most pharmaceutical products that are administered to ill persons for treatment purposes, vaccines are generally administered to healthy persons to prevent disease.
In other words, in the effort to keep healthy people from becoming ill, pharmaceutical should not make them sick.
However, the history of vaccines reveals less careful, even cavalier, vetting processes.
Edward Jenner Vaccinating James Phipps, May 4, 1796
Image credit: Ernest Board (1877-1934);Images.wellcome.ac.u. Public domain. In this famous scene, Jenner is vaccinating an 8-year-old boy in the hopes that the vaccine will confer immunity to smallpox. Although this incident was heralded as a breakthrough in smallpox prevention, the ethics of this experimental use of the vaccine have been challenged.
The urgency that led to Jenner's audacious use of the smallpox vaccine may be understood in terms of the disease's lethality at the time, and its potential to disable. It is estimated that in 18th-century London, death rates from smallpox ranged from between 10 to 30% of total deaths. Those it did not kill, it often disfigured. And among those disfigured were many who were rendered blind by the disease.
Today, the world is confronted with a pandemic of COVID-19 that has spread virtually unchecked for at least a year. The virus has mutated dramatically in that year. Our sense of urgency helps us to understand Jenner's urgency. The highly accelerated rate with which COVID-19 vaccines have been approved has happened in the context of urgency.
New York Javits Center Converted to a Hospital, April 3, 2020
Image credit: New York National Guard. Used under CC 2.0 license. New York became an epicenter of the pandemic in March and April of 2020. According to Wikipedia, there were 29,000 excess deaths in New York that month (over the death toll of April 2019).
However, the accelerated approval process has increased vaccine hesitancy in some populations. I personally have been hesitant, not because the vaccine itself is worrisome (well, yes, of course I have reasonable concerns) but because I am part of a sub-group for whom vaccines may present particular issues: people with an autoimmune inflammatory rheumatic disease, hereafter referred to as AIIRD.
I have never had a discussion about these particular vaccine issues with any of my physicians. I'm not sure if this reflects their reluctance to discuss the issues, or the fact that they don't understand the issues. However, peer reviewed literature on the subject is clear, and I will try to summarize some of that here.
SARS-CoV-2 Emerging From the Surface of Cells, Electron Microscope Scan
Image credit: National Institute of Allergy and Infectious Diseases (NIAID). Used under a CC 2.0 license
COVID-19 Vaccinations
If readers of this blog have been following even casually the discussion about COVID-19 vaccines, they understand that the goal of the vaccine is to produce antibodies against the virus. But wait! People with autoimmune diseases already produce too many antibodies. Isn't that a problem? Well, yes, maybe. The difficulty with answering this question is, the vaccines haven't been around long enough to know for sure what will happen to antibody production in a person with an autoimmune disease.
On March 24, 2021, the Boston Medical Journal published a safety review of COVID-19 vaccines for people with autoimmune diseases. There are a couple of concerning statements in that article. One of the statements is that people with autoimmune diseases were deliberately excluded from the trials. Another is that 'adverse events' reported in the general populations may be more severe in "patients with underlying immune dysregulation".
Sniffer Dog Marking A Cone in COVID-19 Detection Test
The results of this dog sniffer test were published in Plos One. The study demonstrated that trained dogs could detect COVID-19 in the sweat of affected patients. The results need to be repeated in order to be useful.
Image credit: Dominique Grandjean, Riad Sarkis, Clothilde Lecoq-Julien, Aymeric Benard, Vinciane Roger, Eric Levesque,Eric Bernes-Luciani,Bruno Maestracci, Pascal Morvan, Eric Gully, David Berceau-Falancourt, Pierre Haufstater, Gregory Herin, Joaquin Cabrera, Quentin Muzzin, Capucine Gallet, Hélène Bacqué, Jean-Marie Broc, Leo Thomas, Anthony Lichaa, Georges Moujaes, Michele Saliba, Aurore Kuhn, Mathilde Galey, Benoit Berthail, Lucien Lapeyre, Anthoni Capelli, Steevens Renault,Karim Bachir, Anthony Kovinger, Eric Comas, Aymeric Stainmesse, Erwan Etienne, Sébastien Voeltzel, Sofiane Mansouri, Marlène Berceau-Falancourt, Aimé Dami,Lary Charlet, Eric Ruau, Mario Issa, Carine Grenet, Christophe Billy, Jean-Pierre Tourtier, Loïc Desquilbet. Used under a CC 4.0 license
A report by the American College of Rheumatology suggests the possibility that the vaccine may also precipitate a 'flare' (exacerbation of disease) in AIIRD patients.
In addition to the theoretical risks to AIIRD patients, there is the added concern of reduced immunogenicity. That is, the vaccine may not produce enough antibodies in this population to offer protection against COVID-19. This may be the case because people who have an autoimmune condition are likely to be taking immune suppressive drugs. These drugs may suppress the hoped-for antibody production of a COVID-19 vaccine.
So, are the vaccines suitable for people who have autoimmune diseases? Keep in mind as you consider this question that there are whole classes of autoimmune diseases that are separate from rheumatology.
The same ACR report that described potential difficulties with COVID-19 vaccines also states that, "AIIRD patients are at higher risk for hospitalized COVID-19 and worse outcomes compared to the general population." And, "AIIRD patients should be prioritized for vaccination before the non-prioritized general population of similar age and sex."
The bottom line,therefore is (for me), AIIRD patients are probably at a greater risk for severe/fatal COVID-19. Vaccines are not an ideal solution. However, at the moment, they are the only solution. So, in accordance with the ACR recommendation I am getting a vaccine. The ACR hastens to add: "ACR guidance statements are not intended to supersede the judgement of rheumatology care providers nor override the values and perspectives of their patients".
The vaccine offers not only possible immunity. It also is a gift to my family, who otherwise would be hostage to my COVID-19 susceptibility.
Other Types of Vaccines For AIIRD Patients Attenuated Live Virus and Killed Virus
World Tetanus Deaths by Age Group, 1990-2017
Image credit: Our world Data. Used under a CC 4.0 license.
In May of 2020, EULAR (European Alliance of Associations for Rheumatology) issued guidance on vaccinations for people with AIIRD. The guidance suggests that a full assessment of vaccine history, disease status and medication profile be established before a vaccine is administered. One concern is that different medications interact with drugs in different ways. The EULAR guidance includes the recommendation that, if possible, vaccines should be given when the disease is quiescent, and before starting immunosuppressive treatment.
Vaccines containing live, attenuated virus are considered separately from those containing killed virus. Generally, people who are taking immunosuppressive drugs should avoid vaccines containing live virus. For example, the Sabin oral polio vaccine contains a live attenuated virus and the Salk vaccine (injection) contains a killed virus. It is actually possible for someone who receives the Sabin vaccine to give polio to a person who is on immunosuppressive drugs.
Preparation of Sabin Oral Polio Vaccine, Bonn, Germany, 1967
Attribution: Bundesarchiv, B 145 Bild-F025952-0015 / Gathmann, Jens / CC-BY-SA 3.0
In particular, the EULAR guidance on vaccines recommends vaccination occur before treatment with one drug, Rituximab, begins. Live attenuated virus-containing vaccines, such as the MMR and the herpes zoster (shingles), should be avoided or given with extreme caution in people on immune suppressive therapy.
According to the EULAR guidance (subject to decisions by doctors and patients), vaccines which contain killed viruses, such as those that target flu, tetanus and hepatitis, can be given without regard to immune suppressive therapy. For a complete description of the EULAR recommendations, please refer to the the website.
Conclusion
I hope this blog is useful to people who are in the process of getting, or planning to get a COVID-19 vaccine. More than that, I hope people will use the other information about vaccines to make informed choices about their own healthcare. Obviously, I make no recommendations here about a medical decision anyone should make, except for this: be informed.
Tomorrow I get my second, booster, Pfizer dose. I made the decision, because of my complicated medical history, to receive the shot at an annex of a hospital I trust. If anything goes wrong, I'm in the best place to get the best care.
1.https://www.frontiersin.org/articles/10.3389/fimmu.2020.579250/full
2.https://studylib.net/doc/7614153/transcript-of-ann-r.-keefer-s-lecture--segment-of-a-lecture
3.https://www.wsj.com/articles/oxford-pauses-dosing-in-trial-of-astrazeneca-covid-19-vaccine-in-children-teenagers-11617729303
4.https://www.cnn.com/2021/04/13/health/johnson-vaccine-pause-cdc-fda/index.html
5.https://www.cdc.gov/vaccines/pubs/pinkbook/safety.html
6.https://dash.harvard.edu/bitstream/handle/1/37945151/DELEON-DOCUMENT-2018.pdf?sequence=1&isAllowed=y
7.https://www.sciencedirect.com/science/article/pii/S0277953618301862
8.https://jamanetwork.com/journals/jamaophthalmology/fullarticle/415346
9.https://www.ajmc.com/view/a-timeline-of-covid-19-vaccine-developments-in-2021
10.https://en.wikipedia.org/wiki/COVID-19_pandemic_in_New_York_(state)
11.https://ard.bmj.com/content/early/2021/03/24/annrheumdis-2021-220231
12.https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0243122
13.https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf
14.https://www.reuters.com/article/us-health-coronavirus-science/autoimmune-disease-drugs-may-reduce-vaccine-response-antibody-treatments-ineffective-vs-brazil-variant-idUSKBN2BZ2H1
15.https://www.eular.org/index.cfm
16.https://www.cdc.gov/vaccines/vpd/polio/hcp/vaccine-derived-poliovirus-faq.html
17.http://chemocare.com/chemotherapy/drug-info/Rituximab.aspx
18.https://www.virology.ws/2015/09/10/why-do-we-still-use-sabin-poliovirus-vaccine/
19.https://digital.sciencehistory.org/works/2227mq74m
20.https://www.sciencedirect.com/science/article/pii/S1074761306003955
21.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7842169/
22.https://www.wesa.fm/science-health-tech/2018-04-02/site-where-polio-vaccine-was-first-tested-on-humans-to-receive-state-historic-marker
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As usual a great informative article A.G. I’ve heard many arguments for and against getting the Covid vaccine. One couple told me it was like winning the lottery to finally get the vaccinations. As you wrote it is the only solution we have.
With 3 million deaths already in the world, I’d sooner get the vaccine than get covid. I registered to get mine the 28th of this month.
I hope your booster shot went okay and you had no problem.🙏🌺
Hello my friend, @redheadpei,
Everything went well. Two days later my arm is barely sore and systemically I feel no effects. What I do feel is a sense of freedom. My husband can play poker (he's scheduled a game in two weeks!). My son can install my new computer. I can move around (with reasonable protocols) and feel somewhat secure. That's wonderful. I'm so glad you are getting the vaccine. Nothing in life is 100% secure. We make our best guesses and move forward.
Thank you so much for your encouragement, and your generosity. It's Sunday--fun day!--and I have to fix my troublesome collage. I hope to see yours over there later. Enjoy your day :)
I almost want to stand up and applaud this piece! As someone with an autoimmune condition as well ( I've got Hashimotos) and as someone who already got COVID-19, I'm wondering if the vaccine does indeed make sense for me? There's no helpful literature on the subject and as per usual, it's through the various Thyroid Disorder Support Groups that I'm a part of, that I get my information. This post motivates me to delve a little deeper into existing stats and research what the vaccine means for someone with Hashimotos. Easily the most informative and helpful article I've read on here today. Good luck for the second shot of the vaccine!
Hi,
Please do your reading. I'm so sorry you had COVID! There's a lot of information out there, just not definitive. Nobody knows yet because it takes a long time to determine long-term and wide population effects. So, we make the best decision we can and cross our fingers. (Like everything else in life😄)
Haha, my COVID story is almost funny now. I tested positive on the morning of my birthday, a Monday, when I had taken off work to have a relaxing day at home. That said, I've also secretly not worried about getting the vaccine anymore haha. For the short term, atleast! I know that it takes a long time to analyse data and reactions. But as someone with antibodies ( to one strain), I wonder how effective the vaccine is for people who've got COVID. Or is it better first to vaccinate people who haven't gotten it? I'll try compile the existing dialogue around these topics into one post!
There's so much to be concerned about with this virus, regardless of whether or not you have an underlying condition. For those with existing health conditions, it is so much more frightening. Until I read your article, I hadn't considered the additional challenges for those with auto-immune diseases! Oh my gosh, this is really enlightening, @agmoore.
Wishing you luck with the follow-up shot. You are brave and smart to do it. I just hope you don't suffer any extensive consequences!
You are so kind to stop by. I feel I've had a send-off from a friend. I'm combing my hair :) I leave shortly with a good feeling. Thank you!
❤️
:)
🌟🌟
Thanks for this helpful information. I have not yet gotten the vaccine because I have not received satisfactory info about if it will cause an MS exacerbation.
Thank you for visiting and commenting, @melinda010100. Your concern is really valid, I think. I wouldn't have gotten the vaccine yet if it weren't for my husband. He's kind of a prisoner if I am not vaccinated. That doesn't seem fair. We're pretty old and he's lucky to have a nice group of friends he plays poker with (though he hasn't for the last year). He wouldn't socialize with his friends if I wasn't vaccinated. The things we do for love :))
I hope as time goes by there is more information about the potential exacerbation of disease with the vaccine. Meanwhile, I hope you stay well.
My kids and grandkids are being vaccinated so that they can come visit me. In the meantime staying isolated remains my best option. I'm glad the weather here in Wisconsin is warming up so that I can meet up with friends and neighbors outdoors on my deck!
🌻 🌼
I for one will not get the vaccine for numerous reasons but the main one being my autoimmune disorders caused by vaccinations as a child. Last year I had Flu-a in February and then Covid in July. The flu was WAY worse than covid but I accept the pain of the temporary sickness over the life long problems potentially caused by the vaccine, especially an untested one. Well, actually the public are the test subjects now.
Combined with the complete lack of liability on the manufacturers the vaccine religion is very domineering and unwilling to even think that there might be problems with their savior, it is a very dangerous mentality. People doing their own research like you have is the only way to get both sides of the story, and even that is hard to do when everywhere is screaming that we "HAVE" to take the vaccine and limiting the availability of the information.
Hopefully everything turns out okay for you.
Hello @flemingfarm,
I appreciate your comment. You can tell that I'm a skeptic. The distinction between public health policy and individual well being does not escape me. Public health officials think in terms of herd. I think in terms of me :))
We lost a friend to COVID at the beginning of the epidemic and then a few more acquaintances. I take this disease seriously and weigh what I know about risk/benefit (not much). Then I make the best decision I can. At least, if something goes wrong, it was my choice.
I'm back from getting the shot and so far, immediate consequences are almost nil. We'll see.
On another note: I'm sorry you have to deal with chronic disease. It's a rough deal. Blogging is a great, accessible outlet, I find.
I wish you peace.
The most important thing is making an INFORMED decision and you have tried to do your research which is more than many have done. I truly don't begrudge anyone for doing what they feel is right for their own medical situation, that is each person's right and we need to help ensure that it stays that way.
I'm sorry for your loss, it is never easy. My family have had friends die from the flu over the years but we have not had anyone from covid.
I hope that you and everyone else has no ill effect from the shot, our health is one of the most precious things we have.
I have never given the possibility of the covid19 vaccines being contra-indicated in people with autoimmune diseases until now. Perhaps this is largely due to the fact that autoimmune disease incidence is very limited in this part of the world. Nevertheless, you discussed salient points and that sniffer dog that has the capacity to detect covid in sweat is amazing. I would like to know if the experiment is reproducible.
Hi, thanks for stopping by and commenting.
The funny thing about autoimmune disease is, triggers are hard to trace. What may be a trigger in one person may not be in another. There are certain acknowledged antagonists--like sun and silica for lupus, and garlic for pemphigus (can you believe that!)--but even these are variable. Just about anything that promotes an immune response can be an antagonist in someone with an autoimmune disease. So, obviously, the vaccines may be problematic. I am six hours out from my booster and so far, no real problems. So..we'll see
I don't know where you live, but it's amazing that autoimmune diseases would be rare, anywhere. That is great news!
This is a really lovely piece of work that is very germane to our present situation. A couple of lines more and this could be published in a reputable journal. I am here wondering how come was never a trending issue when the vaccines were being marketed. I guess such news does not fit the profit posturing of the big pharmas.
I agree. Also, there is a public health impetus to get everyone vaccinated so that the pandemic can be stalled. That's why they didn't include the group in the trials, I'm sure. You would have seen more difficulties and that would have slowed approval. Just my (educated) guess.
Thank you very much for your kind assessment of my article. I try to write about stuff that will make a difference to at least one person.
Thanks again, @gentleshaid
You are welcome
Risks and side effects are unavoidable because we are all unique individuals due to genetic variations and underlying health complications. I delay vaccination for as long as possible for further observation. Travelling is my passion but I can abstain for another year.
Hello, and thanks for stopping by. There is no certainty in any course of action. We figure the odds and take our best shot. In New York, (where I live) the disease ran a devastating course, took many lives (people I knew), so that was part of the equation.
I hope the next year sees you traveling again.
I'm sorry to know it's devastating in New York. Take care and best wishes!