My name is Kelli and I am the Founder of More Than Lupus. If you are just discovering More Than Lupus, we are so happy to have you and we encourage you to check out our website and social media that are tailored for lupus patients, because it's designed by lupus patients.
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.
We know that there is a lot of controversy surrounding the COVID-19 vaccine, and there are a lot of questions that people want answered before they feel safe to receive it. Moreover, if you live with lupus or another immunocompromising condition, there is added stress and questions that arise regarding its safety and efficacy.
Now, 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. I have been living with lupus since the age of eleven. As an immunocompromised individual, as a nonprofit leader, and as a consumer...I have been very eager to learn more about the vaccine and its possible outcomes on patients like me.
In my research, I noticed I was not the only one with these feelings. In fact, hundreds of people have posted similar queries not just to More Than Lupus, but on other lupus forums.
Here at More Than Lupus, when we see a need - we fill the need, and I felt there was a need for a lupus patient to share their experience of researching, applying for, and receiving the COVID-19 vaccine.
So I found someone who was willing to observe and share their experience with the More Than Lupus Community….me.
I received my second dose of the Pfizer COVID-19 vaccine a few weeks ago and I want to share with you my experience about the process; because, as Marie Curie once said, “Nothing is to be feared, it is only to be understood. Now is the time to understand more, so we may fear less.”
Let’s start from the beginning:
When the COVID-19 vaccines by Pfixer and Moderna were approved, I was eager to learn if they had been studied on individuals like me in the clinical trials. Come to find out, it was not studied on people with lupus. At first I was offended, how dare they exclude us from the studies! But, that is simply not how vaccine clinical trials work. Phase I, II, and III vaccine drug trials are first initiated on healthy models...always. More specified testing occurs after it’s introduced to the general public.
Hearing this though, made me concerned. How would I respond to the vaccine? Would it be safe to get it because it had not been tested in clinical trials on lupus patients? Feeling a little nervous I decided to reach out to my go-to source of lupus information, Dr. Don Thomas who wrote The Lupus Encyclopedia. This is where it gets good. He set me straight by filling me in on some truths.
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.”
Okay, that made me feel a little better. But, I still had more questions, specifically about the medications I am on and how those might affect the vaccine efficacy. Once again, Dr. Thomas provided me with more information.
“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.
Below is a list of the recommended temporary adjustments. For most lupus and “rhupus” patients the main culprits are: methotrexate, Xeljanz, Olumiant, Rinvoq, Orencia, cytoxan, and rituxan.
For me personally, the only medication I had to adjust was my methotrexate once weekly injections. As you can see from the list, HCQ and Prednisone (contrary to some news) does not need to be adjusted. And most doctors would be quick to remind you to never stop taking or alter your prednisone dose without talking to them first.
After hearing this, I felt even more at peace about my decision to receive the vaccine. Ironically, in the state of Oregon, I was not originally approved to receive it as an immunocompromised individual with pre-existing conditions, but rather, as someone who is exposed to others who are immunocompromised. With my nonprofit, I qualified under Phase 1 group 2 and 3, as medical transport, and as a medical resource provider that has contact with immunocompromised individuals - since my work often involves visiting patients in assisted living facilities, taking them to appointments, visiting their homes, and bringing resources to them while they are hospitalized.
My experience with receiving the first dose was eye-opening. I walked into the Oregon Convention Center with what seemed like at least 1,000 of my closest friends and waited in a line that wrapped around the building. We were given different forms at each check-point which we filled out in tandem as we snaked our way through the large building. Interestingly, the vaccine forms do not ask if you have any pre-existing conditions, which oddly made me feel at peace, because obviously if they didn’t ask, they didn’t need to know. I felt more relaxed knowing they were not concerned that I had lupus. The form did ask if I had any reactions to vaccines, reactions for food, or medications. I answered "yes" because I do have an iodine and shellfish allergy which requires me to carry an EpiPen. I was sent to another line to discuss this allergy, and to my surprise was cleared by two nurses before getting back into line to receive my dose.
I then had the pleasure of having a doctor give me my first COVID-19 Pfizer vaccine dose. He reminded me that I would need to stay 30 minutes instead of the traditional 15 minutes due to my allergy. Though there is no shellfish or iodine in the vaccine, they wanted to be extra careful that I didn’t have a rare histamine reaction.
The injection needle was equivalent to that of a flu shot and didn’t hurt. Once finished, I waited for 30 minutes and then walked out of the building feeling relieved. My mind swirled with the significance of the big step I had made of hopefully never having to experience the dreaded symptoms of COVID-19.
My side effects from the first dose were rather mild. I had mild aches and pains, mild headache, and mild arm pain at the injection site that lasted roughly 24 hours. The one interesting thing I noticed was that I had left lymph node swelling in my neck and subclavicular region on the side I was vaccinated. I am prone to lymph node swelling due to my lupus, but just to be on the safe side, I called my doctor and she said that is expected for someone like me who has an overactive immune system. She said not to be concerned and that I could take Tylenol to alleviate any soreness that they caused. Within a week and a half the swelling ceased.
After three weeks it was time for my second COVID-19 Pfizer vaccine dose. I was happy to see there were significantly less people there this time (try to schedule during a week day), and my wait time was less than half as before. The volunteers and first responders were even more efficient than before. I was able to fill out my paperwork and work my way through my nurse consults with surprising speed. I was asked the same questions as before, and I could tell the staff was even more relaxed knowing I had no
adverse reaction to my first dose. I still brought my EpiPen (just in case) and still had to wait extra time afterwards. I walked out of there feeling comfortable and confident that I had made a responsible and wise choice to be vaccinated.
People had warned me that the second dose was going to present more side effects than the first. After my experience, I would agree. My arm was pretty sore and it was challenging to lift. I felt pretty achy, pretty fuzzy, and my subclavicular lymph node swelled like before. Thankfully, I didn't have a fever. I also never experienced redness at the site or what they are calling “COVID Arm.” These symptoms dissipated after 48 hours.
After I received my second dose, I contacted my personal rheumatologist. She was thrilled that I had been vaccinated. Subsequently, every rheumatologist who I have spoken to since, has congratulated me on making the choice to be vaccinated, since they all have recommended their lupus patients receive the vaccine as well.
It is crazy to think that one year ago, the world shut down and we didn’t know if we would ever get back to “normal.” Now, a year later, we have 3 different and effective vaccines for the COVID-19 virus. It is a marvel how modern medicine has allowed us the hope to see the light at the end of this dark tunnel.
If you are wanting to receive the COVID-19 Vaccine, but are nervous or scared, I hope this blog helped ease your fears. I hope by sharing my experience, 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. 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.