Disclaimer: The words and opinions you are about to read are for informational purposes only. The support and resources we provide at More Than Lupus should never replace the advice of your personal physician.
Well, it happened. After two and a half years of outsmarting the crafty coronavirus, it finally caught me. This experience has been eye-opening (metaphorically, since all I have been doing for the last two weeks is sleeping) and it has prompted me to share with the More Than Lupus community what this has been like for a lupus patient of 30+ years to experience the impact of COVID-19.
Now, I know every lupus patient is different, and each person may experience the virus differently depending upon many factors, such as age, health, comorbidities, BMI, and access to healthcare. I want to be clear that what has happened to me, may not happen to you or someone else. However, through sharing my journey on the More Than Lupus platforms, I have received substantial confirmation that many experiences are similar and mine does not appear to be that unique.
I (like many of you who are reading this) am fully vaccinated. This means that I have received 4 doses of the Pfizer Covid-19 vaccine. I made the decision to vaccinate because I am currently on four different immunosuppressive medications and live with secondary immunodeficiency syndrome in addition to systemic lupus. Though that is certainly sufficient reason, I really chose to vaccinate, because, let’s be frank - my immune system has spent the better part of my life betraying itself, and I just didn’t trust it enough to protect me when (and if) herd immunity became a reality. For me, it was too much of a gamble. I have a small child, a husband, and many other people in my life that I would like to stick around for, so a small stick in the arm was not a hard decision.
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. So this blog is not intended to delve into the murky waters of infectious medicine, endorse treatments, or convince you to vaccinate. I fully believe in "your body - your choice." Rather, it is intended to provide insights from a patient's perspective. With that being said, I will gladly stay in my lupus patient lane and let the Fauci’s and Walensky’s do their thing.
CONTRACTING THE VIRUS
In addition to being vaccinated, I have tried to be consistent with continuing to wear masks indoors after the mask mandates were lifted. I know, I am such a rebel. I did this not just because it gave me extra peace of mind, but in compliance with the recommendations of my personal care team and the opinions of dozens of infectious disease doctors and rheumatologists around the world.
However, on a quick trip out of town, I let my guard down for a moment and that opportunistic virus took full advantage of my naiveté. Who's to say exactly where I picked up the hijacker… at the airport or in my Uber… who knows. But what I do know is that I came back from my trip with an unexpected souvenir.
It started with a scratchy throat and mild headache. By the next morning it had snowballed into an avalanche of symptoms including a horrible sore throat, fever, chills, body aches, loss of taste, moderate headache, fatigue, dry cough, and stomach upset.
These textbook symptoms prompted me to take an at home antigen test. After inserting the Q-tip into the test card, the second line appeared almost instantly. I knew it was definitely positive as it continued to darken over the next 15 minutes, so I called my Primary Care Physician to schedule an appointment. I had an inkling they would most likely prescribe the antiviral PAXLOVID™ considering I was high risk, with asthma to boot, and knew I had a small window to start taking it based on what I had read through different medical sources.
After speaking to my care team, they scheduled a virtual appointment the following morning. This is protocol, unless it is an emergency, since they do not want any patient with active Covid-19 coming into a doctors office.
My doctor confirmed the treatment plan and I started PAXLOVID that night, as well as Coricidin (a decongestant-free cough suppressant and expectorant for those with heart issues and high blood pressure…more on that later), nebulizer treatments (as needed), fluids, NSAIDS, and rest.
What is PAXLOVID? PAXLOVID actually consists of 2 antiviral medicines: nirmatrelvir tablets and ritonavir tablets. The 2 medicines are taken together 2 times each day for 5 days.
Here is what Pfizer, the manufacturer says about the medication:
“The FDA has authorized the emergency use of PAXLOVID, an investigational medicine, for the treatment of mild-to-moderate COVID-19 in adults and children (12 years of age and older weighing at least 88 pounds [40 kg]) with a positive test for the virus that causes COVID-19, and who are at high risk for progression to severe COVID-19, including hospitalization or death, under an EUA.
PAXLOVID is investigational because it is still being studied. There is limited information about the safety and effectiveness of using PAXLOVID to treat people with mild-to-moderate COVID‑19.” - Pfizer Website
You may be wondering, “Who is eligible for Paxlovid? Are there people who shouldn’t take it?” According to the CDC, the people eligible for Paxlovid are individuals who are vulnerable to severe outcomes if they were to contract Covid-19. The US Centers for Disease Control and Prevention breakdown the conditions here. Though systemic lupus is not technically listed, it mentions “a person’s risk of severe illness from COVID-19 increases as the number of underlying medical conditions they have increases” (CDC website) including diseases that affect the kidneys, lungs, and heart. However, the category lupus would technically fall under would be “Immunocompromised condition or weakened immune system” which states:
Some people are immunocompromised or have a weakened immune system, because of a medical condition and treatment for the condition. This includes people who have cancer and are on chemotherapy, or who have had a solid organ transplant, like a kidney transplant or heart transplant, and are taking medication to keep their transplant. Other people have to use certain types of medicines for a long time, like corticosteroids, that weaken their immune system. Such long-term uses can lead to secondary or acquired immunodeficiency. Other people have a weakened immune system because of a life-long condition. For example, some people inherit problems with their immune system. One example is called Primary immunodeficiency. Being immunocompromised can make you more likely to get very sick from COVID-19 or be sick for a longer period of time.
People who are immunocompromised or are taking medicines that weaken their immune system may not be protected even if they are up to date on their vaccines.
Other factors including older age and chronic underlying medical problems such as heart disease, lung disease, diabetes and obesity are considered when prescribing PAVLOVID. People who remain unvaccinated are at higher risk for severe Covid-19, too.
However, there are certain medical conditions people may have that either exclude them from taking Paxlovid, or they have to take a different dose. Some medications also interfere with Paxlovid and may need to be stopped for a short time. It can also cause high blood pressure, which is why I was prescribed Coricidin for my congestion which does not contain hypertension exacerbating ingredients. It should be mentioned that people with severe kidney disease need to take a lower dose. For this reason, Paxlovid is now supplied in two different dose packs, one for standard dosing and one for moderate renal impairment dosing. It is extremely important to check with your medical providers about the risks and benefits of PAXLOVID.
As far as my experience with PAXLOVID, I would have to say it did what it needed to do….it kept me out of the hospital. To say I am grateful for that is an understatement.
Is it the most pleasant medication to take? Heck to the NO. Between the virus itself and the medication, my stomach took a beating. The other terribly unpleasant side effect is dysgeusia, a distortion of the sense of taste, that results in what can only be described as what it might taste like to suck on a rusty nail dipped in acid sauce. Yeah, it was bad.
It took three days of dosing before I felt my sore throat and nasal congestion diminish. After the 5 day course, my headache improved. I will say, despite other testimonials, I never felt “good” while on it. Unfortunately, I never had a day that my fatigue wasn’t consuming and my body aches didn’t keep me up at night. I also had to continue use my nebulizer once daily for chest tightness due to my chronic asthma being worsened by the virus.
On day 7 of testing positive (day 8 of symptoms) I decided to re-test myself to see where I was at. I was somewhat surprised to see that I was still positive. I had read and heard from others that testing negative after taking the medication was common. I had also heard to be on the lookout for “rebound” symptoms. So when my headache came back with avengence, in addition to my dry cough and chills, I was disappointed but not surprised.
This brings us up-to-date. I am officially on day 12 of symptoms and as of yesterday, I am still testing positive for Covid-19. Now, was there a possibility that I could have tested negative for a day or two then positive again? Maybe…but unlikely. I mean, I am not testing myself every single day (those tests are expensive and my nose would not like me if I did that) and my symptoms were pretty consistent.
Thankfully, my dry cough is improving, as well as my nasal congestion and brain fog. I still have a little tickle in my throat, as well as a mild headache and fatigue. Honestly, the hardest part at this juncture is not being around people and having to cancel so many Summer activities. I miss facilitating the MTL Support Groups and Monday Facebook Live Chats and truly hope to have the energy to get back to those soon.
It is important to note that there are certain medication adjustments that need to be temporarily implemented when you are diagnosed with Covid-19. Thankfully, I had just had my Benlysta infusion 4 days before I tested positive. The ACR states on their website "to temporarily hold the medication until 2 weeks of symptom free observation." As well as most immunosuppressant medication. However, as always, seek medical advice regarding medication adjustments and never change or stop a medication without consulting your doctor.
For more recommendation breakdowns, visit the American College of Rheumatology’s website: https://www.rheumatology.org/Practice-Quality/Clinical-Support/COVID-19-Guidance
There is still so much they do not know about how this virus works. Even now, on day 12, I could still be potentially contagious since I am testing positive. There is also a lot of unknowns about how lupus and lupus medications can impact viral longevity and health outcomes. Personally, after two weeks of being sedentary, I can definitely feel the musculoskeletal impact lupus and Covid-19 has tag teamed on my body. As far as other long-term issues Covid-19 may have on my lupus, that is TBD.
MTL family, I cannot stress enough how important it is to comply with your doctors recommendations if you have lupus and contract Covid-19. Whether they suggest PAXLOVID or something else, this is the time to trust the experts. I know it is easy to become blasé towards this virus, but heed the advice of your fellow warrior, don't let your guard down if you are immunocompromised especially in public settings. You don't want to mess around with this virus. It is humbling to think where I might be if I had not been fully vaccinated. It's scary indeed.
Lastly, as I wait for most of my Covid-19 symptoms to subside, I am reminded daily that my body is different than most. I am trying to the best of my ability to love my body even now, when it cannot be productive. It has been reiterated to me by every healthcare provider, friend, and fellow Covid-19 survivor, that just like in music, the rests are as important as the notes.
So rest I shall.
Kelli (Casas) Roseta
**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 2022.