COVID-19 & Autoimmune Disease: What We Know Now

Carolyn Serraino

FOR UPDATES ON COVID-19 AS IT RELATES TO AUTOIMMUNE DISEASE, CHECK OUT OUR EVOLVING TIMELINE: COVID-19 NEWS AND RESEARCH UPDATES

While the world at large is still getting a handle on exactly how the coronavirus spreads, what causes COVID-19, and why it affects some people with autoimmune disease, what we know now is still a far cry from what we knew at the start.

As the number of studies on autoimmune disease and the coronavirus increase, we are beginning to see the associations between the two and better understand why certain conditions are high risk. There are instances in which having an autoimmune disease increases vulnerability to COVID-19 complications, and other cases in which having a coronavirus infection may trigger autoimmune or other serious conditions.

What also holds true, is the distinctive way in which this virus impacts individuals—healthy or chronically ill, young or old. Like a fingerprint is unique to each person, your personal risk is unlike anyone else’s.

The High Risk List

The term “high risk” may be used to denote infection risk or complication risk. There is concern over the susceptibility to infection, as individuals with compromised immune systems are generally the first in line for pathogenic attacks. However, the most widely investigated topic—and the one explored in this article—is the risk of serious complications once infected by the virus.

The U.S. Centers for Disease Control and Prevention (CDC) released an updated list of high risk conditions (individuals who are at increased risk of serious illness from COVID-19).

The CDC’s list defines a primary group including cancer, chronic kidney disease, COPD, immunocompromised from organ transplant, obesity, serious heart conditions, smoking, sickle cell disease, and type 2 diabetes, and a secondary group that may signal an increased risk for COVID-19 complications, including asthma, cystic fibrosis, suppressed immune system, neurological conditions, liver disease, pulmonary fibrosis and type 1 diabetes. For the full list, visit the CDC’s website.

The CDC includes heart, lung, liver, and nervous system diseases on the high risk list. While there is limited data on the specific conditions affected in these categories, it is worthwhile to note the autoimmune or autoimmune-related instances of them. Some of the heart, lung, liver, and nervous system autoimmune diseases indicating a potentially increased risk (including systemic conditions) are:

Autoimmune myocarditis
Dressler’s syndrome
Subacute bacterial endocarditis
Cardiac sarcoidosis
Idiopathic pulmonary fibrosis
Autoimmune hepatitis
Multiple sclerosis
Guillain-Barre syndrome
Myasthenia gravis
Lupus
Rheumatoid arthritis
Scleroderma
Sjogren’s

Individuals on immunosuppressive medications such as corticosteroids are also at higher risk for severe COVID-19 complications. However, keeping conditions in check and avoiding debilitating flare-ups may greatly outweigh the potential risks of a suppressed immune system.

Why Are Non-Respiratory Diseases High Risk?

We know that COVID-19 impacts the airways; therefore, COPD and other serious respiratory illnesses appear to present a clear pathway to disaster. Individuals with these conditions need to be particularly vigilant. But how could other conditions also turn a coronavirus infection into a life threatening event?

Organ systems depend on each other.

Heart disease (like autoimmune myocarditis), for instance, presents itself as a likely factor for increased risk because normal operation of the heart is affected by other bodily functions. According to Dr. Maragakis, Senior Director of Infection Prevention at Johns Hopkins, the airways and lungs “work together with the heart to drive oxygen to the body’s tissues. When the lungs are overtaxed due to illness, the heart has to work harder” (4). This is a telling example of the vital connections between the different organ systems in our bodies.

The immune system’s response is the primary culprit.

We are learning that the source of the mayhem might not be the virus itself, but rather the immune system’s response to it. Severe COVID-19 cases may be associated with hyperactive immune responses in both chronically ill and healthy individuals. If you have an autoimmune disease, the immune system is already impaired – this may signal cause for concern.

“I Have An Autoimmune Disease. Am I High Risk?”

It remains unclear if having autoimmune disease automatically puts you at high risk for severe complications.

However, many sources point to no—unless you are also on immunosuppressive medication, are over 60 years old, or have one of the listed high risk conditions (like heart disease or obesity) in addition to autoimmune disease (5).

Many people with autoimmune disease and COVID-19 are asymptomatic or have mild to moderate symptoms and recover, some experience flare-ups or lingering effects, and others are hospitalized.

Apart from type 1 diabetes, most autoimmune diseases are not yet considered high risk by the CDC.

1. We do not have enough data

Studying autoimmune diseases in general is a daunting task, as there is still much unknown about these conditions and their etiology, or causes. Therefore, untangling a relevant relationship between autoimmune disease and COVID-19 is a tall order.

2. From the data we do have, there are mixed outcomes

One review laid out the complicated forces at play in certain autoimmune diseases, demonstrating the need for further study and precaution. In systemic lupus erythematosus (SLE), the overexpression of a protein called ACE2 may be involved in severe COVID-19 cases. Researchers investigating the correlation between COVID-19 and rheumatic disease explain that ACE2 is a “functional receptor for the viral spike [of] glycoprotein, that allows the entry of SARS-CoV-2 into cells.” In some lupus patients, this phenomenon may correlate with increased susceptibility (6).

Other studies—the recent “SARS-CoV-2 infection among patients with systemic autoimmune diseases” conducted in Italy, a case series from New York reporting on “Covid-19 in Immune-Mediated Inflammatory Diseases”, and the “Epidemiology and Outcomes of Novel Coronavirus 2019 in Patients with Immune-Mediated Inflammatory Diseases” from the Global Rheumatology Alliance—found no higher risk of COVID-19 complications associated with autoimmune disease.

A review and meta-analysis on the association between severe COVID-19 and autoimmune disease “showed that autoimmune disease was slightly associated with increased risk of severity and mortality of COVID-19” (7). They do clarify that the statistical difference was not significant, but that these findings do not quell the threat and more research is needed.

3. The impact of autoimmune disease and the behavior of the immune system are different in different people

While those living with autoimmune disease do experience altered immune system function, the ability to fight off pathogens is not necessarily weakened; rather the response is misguided.

Some people are more vulnerable to harmful bacteria and viruses because their bodies are busy attacking their own tissues – or they are living with suppressed immune systems. For others, hyper-vigilant immune systems may prevent them from getting sick often. A body that overreacts to benign substances, like foods or harsh chemicals, may actually continue putting up a good fight when it comes to the real enemies: pathogenic microbes like the coronavirus (8, 9). It depends on the individual.

It is possible for symptoms of COVID-19 to linger in people with chronic illnesses, despite a lack of severe symptoms and hospitalization. Both the CDC and a survey conducted by the Indiana University School of Medicine found that chronically ill patients who contracted the virus experienced a particularly long road to recovery, with lingering symptoms like fatigue and cough, as well as skin and neurological problems (10, 11). To read more about lingering symptoms, scroll down to the section: “Long COVID”

Have you been feeling anxious and fatigued lately? Or experiencing more autoimmune flare-ups? Even if you’re not at high risk for serious COVID-19 complications, having a chronic illness means that stress is often a symptom trigger. And the pandemic, in and of itself, can feel like an endless symphony of worry, isolation, life changes, and other stressors. You’re not alone. After surveying arthritis patients, Creaky Joints reports that 42% of patients are experiencing an increase in fatigue during the pandemic.

Autoimmune Symptom Confusion

It is not uncommon that some of your autoimmune symptoms mimic those of COVID-19. You may be wondering how to tell them apart. One telltale sign you might have coronavirus is the loss of taste and smell, which is not a common autoimmune symptom.

However, the data is still limited and there’s no hard-and-fast rule about which symptoms—like shortness of breath, fever, or fatigue—would signal presence of the virus and which would belong to an autoimmune flare-up.

Below are a few thoughts from rheumatologists—thanks to the Global Healthy Living Foundation and Creaky Joints:

Rheumatic conditions (lupus, rheumatoid arthritis, scleroderma) do not seem to experience increased rates of infection or severe complications
If you experience a coronavirus-like symptom (like fever), be aware of other symptoms that may indicate patterns consistent with a flare-up
Notice if your dry cough, fever, fatigue, etc. is typical for your condition, or if it feels like something new

Why Are Healthy People Affected?

A seemingly healthy individual may, in fact, be living with undetected issues in the body.
A preexisting—and possibly genetic—issue with the immune system may enable the virus to move from the nose and throat, and into the lungs (12, 13). Unable to produce the antibodies responsible for barring the virus entry into certain cells, which is how coronavirus multiplies, the body is thrown into submission and develops complications like pneumonia and acute respiratory distress syndrome (ARDS) (12).

Other undetected issues with the immune system, in conjunction with a COVID-19 infection, can give rise to events known as cytokine storms. The ensuing events can land otherwise healthy people in the hospital.

Cytokine storm is a general descriptor for any number of “hyperactive immune response[s] characterized by the release of interferons, interleukins, tumor-necrosis factors, chemokines, and several other mediators,” explain researchers in their JAMA article, “Is a ‘Cytokine Storm’ Relevant to COVID-19?” Sky-high numbers of these molecules (generally lumped together under the umbrella term of cytokines) are released and can wreak havoc on the body.

The intensity of these hyperactive responses does not mean that the immune system is particularly good at fighting off the coronavirus. Rather, the off switch just doesn’t work. A bloated army of proinflammatory cytokines will remain on high alert and ready to fire well after the threat is over. Consequently, the immune system becomes chronically on-edge, which triggers actions against the body’s own cells. Herein lies the potentially deadly outcome, as it can eventually lead to multiple organ damage.

The use of the term “cytokine storm” to describe the pathophysiology of severe COVID-19 complications is still debated. However, the theory has taken hold throughout the public and the scientific community. It brings a modicum of attention to immune-mediated events like autoimmunity, as we also see the cytokine storm phenomena in some autoimmune diseases, such as lupus and rheumatoid arthritis (14).

Thankfully, severe complications in healthy individuals continue to be rare, and researchers are testing various drugs to dampen hyperactive immune responses. Biologics used for many autoimmune diseases and affecting specific cytokine receptors and are currently being trialed as potential treatments for COVID-19 (15).

Can COVID-19 Trigger Autoimmune Disease or Illness?

The body’s immune response to the virus is the center of the story here, as well.

Some healthy individuals have experienced COVID-19 complications that do not result in immediate lung disease or death, but in the triggering and potential development of autoimmune conditions.

In a University College of London Hospital’s study of 43 patients previously infected with the coronavirus, eight acquired Guillain-Barre syndrome and nine acute disseminated encephalomyelitis (ADEM), both autoimmune diseases. The researchers suggest that this outcome was the result of the body’s immune response, rather than the virus itself.

Other studies have identified an overproduction of multiple autoantibodies in some COVID-19 patients. According to researchers investigating “The Correlation Between SARS-CoV-2 Infection and Rheumatic Disease”, such an event “is an important marker of autoimmune tolerance deficiency,” and may therefore signal a future of autoimmunity for those patients.

It is possible for COVID-19 to trigger the development of autoimmune disease or other post-infection fallout. After all, other pathogens—Epstein-Barr virus (EBV), Parvovirus B19, Rubella virus—have been implicated in the development of autoimmune diseases (13). Nevertheless, the numbers are small, and further research is needed to understand the true impact and substantiate this theory.

Long COVID

Another possibility is long COVID—an extension of symptoms beyond the absence of infection. The National Institute for Health and Care Excellence defines it as “signs and symptoms that develop during or following an infection consistent with COVID-19, continuing for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body.” Symptoms many people with the condition can also experience are pain, fatigue, high temperature, and mental health conditions (17).

In individuals with long COVID, coronavirus tests often come back negative. As a result, healthcare providers must lean more on patients’ personal experiences and symptoms, rather than evidence by way of test results. This different way of approaching health concerns could mean better care for people with chronic illness and autoimmune disease in the long-run.

Other terms used to describe long COVID, like post-COVID syndrome and chronic COVID-19, actually “risk delegitimizing suffering…and that will make it harder for people to access care,” the authors of Nature editorial state (16). Long COVID is coming into the spotlight as more and more researchers and doctors search for answers. If you or a loved one is experiencing long COVID, groups like LongCovidSOS are providing support and information.

The Autoimmune COVID-19 Research Project

One way we’re understanding more about the effects of COVID-19 on autoimmune disease is through patient-centered initiatives like the Autoimmune COVID-19 Project, developed by the Global Healthy Living Foundation and Creaky Joints.

The authors of this longitudinal study are using online surveys to gather a broad spectrum of perspectives from individuals with autoimmune disease. Information requested includes symptoms, experiences with testing, telehealth, concerns about immunosuppressive therapy, and preferred sources of information about the virus.

Analyzing this data will produce a better understanding of the impact COVID-19 is having on quality of life. In this type of initiative, the experience of the patient is highly valued. Harnessing the expertise of researchers plus the power of patient voices will add a unique kind of knowledge to the conversation surrounding infectious disease today, as well as for future pandemics.

If you have been diagnosed with an autoimmune or related condition like rheumatoid arthritis, inflammatory bowel disease, multiple sclerosis, or vasculitis, you may participate in this study to help researchers gain more insight into the relationship between COVID-19 and autoimmune disease.

Our knowledge of autoimmune and the coronavirus is only going to increase, especially as the world gains a greater interest in the experiences and perspectives of the patients themselves.

Reducing Risk

Just as nutrition and lifestyle factors can have profound impacts on our chronic conditions, so can they affect the way our bodies react when faced with COVID-19. The forms of prevention we’re almost too familiar with—hand washing, face masks, social distancing, testing, contact tracing—are not our only tools.

The seemingly benign factors of nutrition and lifestyle are powerful enough to steer us towards either health or disease. Practices such as proper nutrition and hydration contribute to optimal immune system function and that of other body systems, which helps prevent the virus from triggering severe complications. If we are able to make more healthful choices, then we can take some power back from the virus.
It is important to keep in mind, however, that many people are living without access to fresh foods, support, financial stability, comfortable housing, and resources to manage their autoimmune diseases, let alone incorporate diet and lifestyle changes. This is one reason why all the other methods we’re using to combat the coronavirus (yes, like face masks!) are equally important.

As always, risk should be assessed on a case-by-case basis. Outcomes depend on whether or not your disease is under control, you have multiple conditions, you’re taking medications, you experience racial inequities, you have access to quality care and resources, and a host of other factors with which we aren’t yet familiar.

Prevention Tips

Focus on your personal health by eating nutrient-dense whole foods and staying hydrated
Get adequate rest by practicing good sleep hygiene
Move your body daily through stretching, walking, yoga, swimming, dancing or any exercise that feels safe and enjoyable
Keep chronic stress at bay, as elevated stress, anxiety, and fear can keep our bodies in “fight or flight” mode. Research studies have repeatedly demonstrated the effects this state of being can have on our bodies – including our immune systems. The impacts of stress are especially important to all individuals with chronic conditions like autoimmune disease.
Stay attuned to your mental health by following psychologists’ advice for chronic illness patients, practicing mindfulness techniques, reframing negative thoughts, and reaching out to loved ones and others within the chronic illness community