Disclaimer: The words and opinions you are about to hear are for informational purposes only. The support and resources we provide at More Than Lupus should never replace the advice of your personal physician.
If you live with lupus or another immunocompromising condition, understandably there are additional questions (and sometimes additional stressors) regarding the safety and efficacy of the COVID-19 vaccine, and now the COVID-19 booster recommendations. Not to mention still many unknowns about the virus itself, how it affects lupus patients, and looming fears about the rise of new variants, and breakthrough cases.
As I have mentioned one-zillion times, I am not a doctor or a researcher. I do not work for the CDC, or the NIH, or a pharmaceutical company. I am a lupus patient and as an immunocompromised individual, as a nonprofit leader, and as a consumer...I have been extremely invested in learning more about the vaccine and its possible outcomes on patients like me.
Over the past several months, it has become crystal clear that I am not the only one on the hunt for reliable and legitimate information, and here at More Than Lupus, when we see a need …we fill the need and we have been attempting to address this "need for information" as best as we can. This blog is yet another step in that plan of action, intended to give you helpful information (from a patient perspective) that you can discuss with your care team.
NEW American College of Rheumatology Recommendations:
The American College of Rheumatology's COVID-19 Vaccine Clinical Guidance Task Force recently published a summary for patients with rheumatic and musculoskeletal diseases that was updated on August 3rd 2021. Their statement is as follows,
"Based on evidence published to date, the expected benefits of the COVID-19 vaccine outweigh the potential for vaccine harm in most RMD (rheumatic and musculoskeletal disease) patients. - ACR Guidance Statement
Included in their updated statement were NEW medication adjustment guidelines for the vaccine and supplemental dosing (booster shot). Here is the LATEST graph as of this month.
*if the print is too small, you can read the full document here.
As you can see, the ACR is now recommending temporarily stopping or adjusting the dosing schedule on some drugs, such as cyclophosphamide, methotrexate, mycophenolate (CellCept, Myfortic), rituximab (Rituxan), JAK inhibitors (Xeljanz, Olumiant, Rinvoq), abatacept (Orencia), Tylenol, and NSAIDs. This goes for the first two vaccine doses and for the booster.
I know, it's a lot and I am sure you are asking yourself, "Seriously?" I get it, I really do. However, since researchers do not know exactly how patients with lupus, other rheumatic autoimmune diseases, and immunosuppressed patients will respond to the vaccines, the experts are recommending extra caution with any medication they think may lower the efficacy of it. However, all these updates have included caveats that each case needs to be individualized based on disease activity and personal doctor recommendations.
Should We Be Concerned About the Delta Variant?
Well, not to sound like an alarmist, but yes.
According to the CDC, the COVID-19 Delta variant is more than 2x as contagious as previous variants. Not only that, data suggests the Delta variant causes more severe symptoms and negative patient outcomes in unvaccinated people. The good news is, fully vaccinated people with Delta variant breakthrough infections appear to be infectious for a shorter period and with far less severe symptoms. However, if you are unvaccinated, you are at the greatest risk, because vaccinated people can still spread the Delta variant to others.
Dr. Robert Katz, a leading rheumatologist out of Northwestern Memorial Hospital puts it like this in a recent article for Lupus Society of Illinois:
"Lupus patients are vulnerable, but with the new mRNA COVID-19 vaccines, they are largely protected. A booster shot will be required either now for those who are on immunosuppressive medications or likely in the future because of further changes to the virus. The Delta version is causing a problem, and future mutations of the virus are a threat. Fortunately, vaccine innovation is responding to it."
To Booster or Not To Booster?
Okay, here is the deal: early reports from COVID-19 vaccine studies unfortunately suggest that patients on immunosuppressants have lower response rates. A study out of Johns Hopkins Hospital has shown that patients on mycophenolate mofetil, rituximab, and steroids (when combined with another immunosuppressant) have the highest rates of nonresponse, (meaning they produced little or NO antibodies after being fully vaccinated).
The fear is that most immunosuppressed patients, like lupus patients, are unsure of how well they responded to their COVID vaccines, and, in some cases, if they have any protection at all. Sadly, several lupus patients have reached out to us saying antibody testing revealed low to zero antibody response. Scared and confused, they feel once again incredibly vulnerable to the virus. Which is why most doctors recommend continuing to social distance and wear masks even if you are vaccinated.
However, there is hope. Recent studies published by the New England Journal of Medicine reported significant responses in immunosuppressed organ transplant patients who received the booster. Though it wasn't a "lupus study" it provided reassurance that a COVID booster vaccine will work for lupus patients, and other autoimmune disease patients, who are immunosuppressed and on many of the same medications that transplant patients take.
To Test Your Antibodies Or Not?
So the next question I am sure you are wondering is, "Should I get my antibodies tested?" Sadly, that is really a tricky answer. The common COVID-19 antibody tests available to most doctors do not test for the SARS-Cov-2 spike protein antibodies which is essential to test for vaccine responses, so few patients know if they responded or not. The only test widely available is the "standard antibody" test which merely gives a positive or negative response. This is not entirely helpful because you could have very few antibodies and still test positive for some, even if they are not enough to truly protect you from getting the virus. That is why the CDC recommends not getting your standard antibodies tested.
The best way to know what your SARS-Cov-2 spike protein levels are is to enroll in a study like the one at Johns Hopkins. Here is a link to that questionnaire.
What "Dr. T" Who Wrote the BOOK on Lupus Says:
On any new medical development that may affect the lupus community, I always reach out to my go-to source of lupus information, Dr. Don Thomas who wrote The Lupus Encyclopedia. For those who are still hesitant to receive the vaccine, this is what he shared with me:
The clinical trial practices were standard - even though it seemed rushed to us, there were no cutting corners or unethical activity to get it approved.
This is the most studied vaccine ever in history. And…
(Which is the best one) Historically lupus patients respond very-well to vaccines.
I had heard that we didn’t respond well, so I asked about that, and he cleared the air. He went on to state, “Sometimes lupus patients don’t respond well to LIVE vaccines. But, thankfully the COVID vaccines are not live vaccines; therefore, most should tolerate it well.”
“Historically, there have been a few lupus medications that have lessened the effectiveness of vaccines in past studies. Because of this, there are recommendations to adjust medication doses temporarily if you are going to receive the COVID-19 vaccine” he stated.
Dr. Thomas has several article postings on the vaccine and COVID-19. To read all of the blogs in their entirety, click here. Also, if you have questions regarding the COVID-19 vaccine, it's safety and efficacy please join us for a Q&A with Dr. Thomas on September 4th at 1:00 PM PST on the More Than Lupus Facebook page.
What Is Stopping People From Getting Vaccinated?
Vaccinations have also long been the subject of various ethical controversies. The key ethical debates related to vaccine regulation, development, and use generally revolve around enforced mandates & personal freedom, research and testing, religious rights, and access disparities. For more detailed information on these debates click here. However, these are NOT the only things that can influence someone. Where a person lives, the cultural norms they grew up with, and the family and friends around them - subconsciously influence how one feels, what career path a person takes, and even... if they choose to be vaccinated.
Not only does your family, culture, religion, and political association affect what decisions you make - past trauma can majorly affect your decision as well. Maybe needles are incredibly triggering to you. Maybe you had a bad medical experience and now you avoid putting anything into your body. Maybe, being a person of color, you know and have experienced first hand medical injustices and do not trust Western medicine.
All of those and many more that are not listed can stop you from wanting to get vaccinated. As real (and as difficult) as those feelings may be; unfortunately, time is running out.
As I am writing this, I took a quick break to read an article that popped up on my email. It was written by an ICU doctor in Southern California and published by the Los Angeles Times. Here is what the doctor had to say after watching another unvaccinated patient die in her ICU:
"The burden of this pandemic now rests on the shoulders of the unvaccinated. On those who are eligible to get vaccinated, but choose not to, a decision they defend by declaring, "vaccination is a deeply personal choice," But perhaps never in history has anyone's personal choice impacted the world as a whole as it does right now. When hundreds and thousands of people continue to die, when the most vulnerable members of society, our children, cannot be vaccinated - the luxury of choice ceases to exist.
If you believe the pandemic is almost over and you can ride it out, without getting vaccinated, you could not be more wrong. This virus will find you.
If you believe I'll just wait until the FDA approves the vaccine first, you may not live to see the day." - Dr. Anita Sircar
(Anita Sircar is an infectious disease physician and clinical instructor of health sciences at the UCLA School of Medicine)
On a personal note, I received my recommended booster shot yesterday. Filling out my paperwork was quick and easy and I did not need a doctors note or prescription to receive it. 24 hours later, I feel very similar to how I felt after my 2nd Pfizer shot, tired, achy, mild headache, and sore arm. My rheumatologist, as well as every other rheumatologist I have spoken with, recommend taking the booster even though I have a history of anaphylaxis related to an iodine/shellfish allergy. I brought my EpiPen just as a precaution, and had ZERO histamine response. I walked out of the pharmacy relieved feeling I made the best decision to protect myself and my family from this terrible virus.
May I be frank? One of the reasons I choose to receive the vaccine and booster is because my immune system has spent 30 years betraying my own cells and attacking itself. Do you think I trust it to work properly on its own and assume "herd immunity" will keep me alive? Heck to the no. Sorry immune system, I am calling in back up and I am not ashamed to admit it. Furthermore, I would never be so prideful as to assume I know better than all the worlds top scientists and researchers on this subject. Further-further-more, If I can't trust the FDA, CDC, NIH, and WHO on this, then guess what? I better stop taking every medication that has saved my life, I better stop brushing my teeth, I better stop using those eye drops, that mouthwash, etc.... see where I am going with this? It is hypocritical for me to say I don't trust these organizations when I am using their products every moment of everyday. Just something to think about.
If you have not received the COVID-19 Vaccine, I hope this blog helped ease your fears about the vaccine itself. I hope by sharing my experience, and the views of some of the nations top rheumatologists, it helps you make the best choice for your health. Additionally, I implore you to make your decisions based on factual data supported by legitimate non-biased sources.
As I close, I want to remind you (and hopefully urge) you to think about something. I know I have said this before, but as members of a very large health community, it is important to remember that at the end of the day, we have a choice to either be a part of the public health problem or part of the solution.
I hope, after careful examination, you will join me and choose the latter.
In love and logic,
Note: At More Than Lupus, we are committed to partnering with esteemed medical professionals and highly regarded research organizations to bring you the latest, most reliable, and trustworthy COVID-19 vaccine related information.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.