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Coronavirus and Lupus | Things to Know

Anna Schoenbach 4 years ago 21 comments
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Coronavirus, also known as COVID-19, is a respiratory disease related to the common cold. Although most healthy people do not need to worry about the disease, people with lupus should be careful.

This disease has been in the news lately, and COVID-19 (short for Coronavirus disease 2019) may well be on your mind. You are not wrong for worrying. Lupus Warriors are more susceptible to getting all diseases, and are very likely to have more severe symptoms. However, the news and social media are spreading a lot of misinformation and panic.

Here is what you need to know to protect yourself during this epidemic, based on what we know as of March 2020. If anything changes, we will keep an eye out for you, but you should keep track of it on reputable sites:

Disability-benefits-lupus

What is Coronavirus?

Viruses are like little machines that hack the machinery of the cell and use it for their own advantage. COVID-19 is a virus in the coronavirus family, the same family as the common cold and to SARS (severe acute respiratory syndrome.) It has similar symptoms to the flu (influenza). However, it is not related to the flu. Tamiflu is not known to be effective. Currently, there is no vaccine for COVID-19. Although one is presently in the works as of March 2020, it may take over a year to be approved for use.

Infection rates

The immune system is good at attacking invaders that it is familiar with. But, unknown invaders provide  a challenge.

COVID-19 is described as a ‘novel’ coronavirus. It is a new form of the virus. The outer shell that it developed as it passed through multiple different animal hosts is now different. The antigens (the parts that the immune system recognizes and targets for attack) have changed. This means that our immune system does not recognize COVID-19 yet or have a strategy to combat it.

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How does it get passed along?

Coronavirus is highly contagious. It passes from person to person in droplets of mucous and saliva that are formed when someone coughs or sneezes. These droplets can also be passed through normal breathing.

However, this is different from being an airborne virus. Droplets generally don’t travel too far from the body, usually about 6 feet. They can ‘stick’ onto surfaces and can be transferred from the surface to the hands to the mucous membranes in the eyes, nose, and mouth.

Additionally, there is some thought that it might be transmitted through the “fecal-oral” route (from feces-contaminated hands to the mouth). But this is not yet confirmed (as of March 2020) .

Because this is a ‘novel’ virus, the body has a slightly harder time fighting it off, and people with autoimmune disease are especially vulnerable.

 

What are the Symptoms?

Coronavirus presents symptoms much like the flu, including:

  • Fever, can be low grade or high grade
  • A cough
    • Specifically a deep-lung cough known as a “Dry Cough.” This is different from a cough caused by post-nasal drip and usually more intense.
  • Shortness of breath
  • Headache
  • Diarrhea

It is very difficult to tell if an infection is influenza or coronavirus, but healthcare providers are more aware of the epidemic. Typically, COVID-19 will be diagnosed by using imaging technology (radiography or CT scans) to look for abnormalities in the lungs. Hospitals will also test potentially infected people using Real-time reverse transcription PCR. This process that looks at the RNA blueprints and checks them against the known blueprint of COVID-19.

Most cases (80%) will be very mild in otherwise healthy people. Also, children are very resistant to the disease. The exact mortality rates are not yet known, and vary depending on the population. As of March 2020, the range was 0.6% mortality to as high as 6.1% mortality. The data is still coming in, and it is thought that the mortality rates for COVID-19 are much lower, because many mild cases were not reported.

Why are People with Lupus at Higher Risk?

People with Systemic Lupus Erythematosus (SLE) and other autoimmune diseases are very vulnerable to infections. This is because their immune system is already misbehaving and ‘distracted,’ using its resources to fight their body instead of invading pathogens such as bacteria and viruses.

In particular, lupus can cause inflammation and damage in the lungs, which is the main area that coronavirus affects. It also interferes with sleep and can make absorption of oxygen more difficult. This weakens the whole body can cause further damage to your organs. Accrued damage makes Lupus Warriors less healthy overall. And, puts them at higher risk of more severe symptoms as the illness damages them further.

In addition, many lupus medications suppress the immune system to prevent the autoimmune response. This, unfortunately, shuts down the immune system altogether, which makes it easier for diseases to take root in the body.

All of these aspects of lupus conspire to make people with lupus especially vulnerable to upper respiratory tract infections like coronaviruses. They are also more likely to be sick for longer periods of time, to have more severe symptoms, and potentially require hospitalization.

Coronavirus-lupus

Increased risk for Lupus Warriors

People with lupus are generally more vulnerable to infections. Plus, they are more likely to end up with severe symptoms due to both a suppressed immune system and lower overall health. Since this is a highly contagious disease, catching it is a concern.

For younger people with no dysregulation of the immune system, the disease is usually mild. Sometimes not even noticed or diagnosed, and it passes on its own. Still, everyone should be careful because health resources are limited. Since the coronavirus epidemic is also coming along with cold and flu season, more beds and equipment will be needed to take care of patients. People with lupus are more likely to need additional treatment and hospital-based care. So, those needing services may face these shortages firsthand.

This will also mean that doctors and nurses are stressed and overburdened. Taken together, these things can have a negative impact on care. And, hospital will have higher-than-normal concentration of sick and contagious people.

Treating COVID-19

Most cases of COVID-19 are mild and require rest, nutrition, and very basic care. However, people with lupus are at risk for more severe symptoms. High fevers, lung failure, and problems in other organs will require hospitalization.

At the hospital, treatment may include:

  • IVs to maintain hydration and nutrition
  • ventilators to keep the lungs working properly

Remdesivir is a new antiviral drug originally designed to combat Ebola and Marburg virus by preventing them from replicating in the cell. If they can’t replicate, then they can’t continue to cause the infection. Remdesivir has the potential to attack other single stranded RNA viruses, including Coronaviruses like COVID-19 and SARS. It is currently under trial to make sure that it does work, without causing harm. So far it is very promising.

Until Remdesivir is approved, treatments will be focused on maintenance and helping you battle symptoms.

 

Avoiding the COVID-19 outbreak

The biggest advice that experts around the world are giving is “wash your hands.”

The second biggest piece of advice is to get the flu shot. And, make sure that your family does too. While the flu shot will not protect you from coronaviruses, it will protect you from also having the flu. It is safe for Lupus Warriors to get the flu shot and it is usually covered by insurance. Since people with lupus are also vulnerable to the flu, and since being sick increases your risk of more severe symptoms, it is a good idea to protect yourself. Protecting your family also protects you, since if they don’t catch the flu, they cannot spread it to you. You can read more about lupus and the flu here.

Healthy children will usually have mild symptoms of COVID-19, but will spread the virus for longer. People with lupus who spend time around children (or children with lupus who are going to school) should be careful about close contact and use usual anti-flu measures.

Coronavirus does not have a vaccine yet, but it spreads a lot like the flu and you can protect yourself in other ways.

Coronavirus-lupus

Preventative measures

  • Wash your hands properly and frequently. Use soap and water and rinse for 20 seconds at a minimum.
  • Keep your hands away from your eyes, nose, and mouth.
  • Remain 6 feet from someone who may be sick and cut down close contact (handshakes, hugs, kisses). This will reduce spread.
  • Keep surfaces clean, either with soap and water or with an antibacterial that is EPA certified, specifically, that it works on coronaviruses.

Coronavirus does not mutate and change its ‘coat’ (the part of it that the body recognizes) as often as flu. In fact, the virus actually has a way to stop itself from mutating.

It is also very likely that, like the flu and the common cold (also a coronavirus) cases will go down as the flu season (winter and early spring) ends. The flu season can start in October and run through May, but generally the worst months are January or February. A lot of respiratory viruses follow this path. SARS, a related virus, also slowed at these times.

 

What about Going Outside?

Avoiding large gatherings is a good idea. Viruses spread easily between people bunched up close together. Hospitals are also areas where there may be several cases of coronavirus (and flu) all in one place. So it might not be a bad idea to stockpile medications or talk to your lupus treatment team about limiting time spent in a hospital setting.

These strategies are known as “social distancing” and can help keep people healthy while stemming the transmission of coronavirus. Nervous about going to the gym, dating, or the grocery store? Experts share insights on social distancing.

Going outside should not be an issue, however. You should definitely keep up your exercise regimen. Surprisingly, airplanes are relatively safe. The air circulation systems have hefty filters that can trap even viruses. But, COVID-19 can spread to other people in the same row easily, so they are not totally safe.

News Updates

Added on Wednesday, March 25: In guidance published on Friday, the U.S. Society of Critical Care Medicine said “there is insufficient evidence to issue a recommendation on the use of chloroquine or hydroxychloroquine in critically ill adults with COVID-19.”

 

Keep Yourself Up to Date!

Make sure you get your news from reliable sources, including your own clinicians.

Looking to simplify your news stream? Minimize the chaos and get your information right at the sources:

Comments (21)

21 thoughts on “Coronavirus and Lupus | Things to Know”

  1. Thank you this is the first information I’ve seen specifically for lupus warriors. I have taken my son out of school until further notice to limit our exposure. I am a school counselor and maybe taking a leave for the remainder of the year.

    Reply

  4. I can’t help but be disappointed at the misinformation in this article given that I emailed you the World Health Organization’s COVID-19 treatment protocol which expressly lists chloroquine and hydroxychloroquine as first line treatment (on page 35), in addition to several others. This is critical information for lupus and RA patients to have, since most of us are on Plaquenil. A US pulmonologist and board certified medical expert explains why he thinks Plaquenil works against SARS and MERS in this video: https://www.youtube.com/watch?v=U7F1cnWup9M but there are now numerous published studies available online and in fact there have been since SARS-COV-1 and MERS going back a decade. COVID19 is a SARS virus, it is designated as SARS-COV-2, the second SARS coronavirus, it is not like the common cold, it is a BETAcoronavirus like SARS and MERS, and both of those responded well to Plaquenil. Japan, South Korea and now China all are treating their patients with Plaquenil for mild, moderate and severe cases as the standard of care in varying doses with either chloroquine or hydroxychloroquine, (and with a new study reporting that the hydroxychloroquine version is more effective than chloroquine), but with some patients in clinical trials for Remdesivir and other AIDS antiretrovirals and some other drugs that you can find on clinicaltrials.gov doing a search there for coronavirus and COVID-19 clinical trials. But at this point the antimalarials are working and for this reason they seem to have abandoned the “clinical trials” and are now just administering the medication as standard of care. Read the press releases from Japan and South Korea. Watch the You Tube video from the US pulmonologist I linked above comparing their death rates to those in Italy where Plaquenil is not being used, and where the situation is more dire by the hour.

    What does this mean for lupus patients? First it means that we may actually enjoy some measure of protection from the virus, perhaps, a rare lucky break, perhaps. Second, we may be in for a shortage of our necessary medication in the near term and therefore it is especially important to make sure we have a 90-day supply on hand. Do you own research, look at the WHO protocol that this article curiously cites, while completely disregarding. I can only surmise that this is because the CDC does the very same thing on it’s website. The CDC only lists the Remdesivir trial, and makes passing cite to WHO, while ignoring ALL of the World Health Organizations research and protocols, and the numerous published papers, studies and adopted protocols of Japan, South Korea and now also China, that are succeeding and which are based on the WHO guidelines. Meanwhile, clearly our own government, including the CDC which isn’t even the leading agency responding to COVID19 or issuing guidelines (that in seriousness has fallen to TWITTER @realdonaldtrump), yet is the source of your information, is NOT SUCCEEDING in presenting or conveying accurate and useful information to the public.

    But you have had this suppressed WHO information for several days nonetheless, because I emailed it to you. I am linking it again in these comments along with MORE RECENT STUDIES IN MARCH CONFIRMING THAT PLAQUENIL IS EFFECTIVE AGAINST CORONAVIRUS, and hopefully you will let this comment post, as a service to the lupus patients. This the World Health Organization we are talking about, not Tammy Faye Bakker’s ex-husband’s miracle silver pills cure. See the MedCram video of Dr. Seheult linked here also for more info on HOW he thinks that it is that Plaquenil works to help inhibit replication of the virus. And this IS what the studies find it does, it inhibits the virus from replicating, which means that we currently on Plaquenil may indeed be advantaged in this regard, a small bit of welcome news, but no lupus patient is going to go clubbing to celebrate, we all avoid crowds as a matter of practice anyway! So please post this information, as at the very least THREE COUNTRIES are prescribing our medication as the standard of care, and we may have a shortage of our needed medicine very soon to deal with. Moreover, this information may illuminate our treatment decisions. For example, once I read the studies, I elected to continue my Benlysta treatments with less fear of disastrous results. I have had to forgo Benlysta before and joint pains and fatigue seem twice as bad during those months than they ever were in memory, bringing on a wave of depression on just how much lupus sucks. So I really thought I’d have to give up the Benlysta, but studies (maybe not the ones in these links, do show that there *may* be a measure of protection, which for me personally was enough to keep me going, for now. So please give the patients this critical WHO information and and vetted medical information, and let them factor it into their own decision making. You are NOT an arm of the CDC, limited to the nonsense denialism of Trump’s shameful performance on COVID19 thus far. Thank you.

    https://www.youtube.com/watch?v=U7F1cnWup9M

    https://www.who.int/docs/default-source/coronaviruse/who-china-joint-mission-on-covid-19-final-report.pdf

    https://www.who.int/emergencies/diseases/novel-coronavirus-2019/events-as-they-happen

    https://www.unboundmedicine.com/medline/citation/32074550/Breakthrough:_Chloroquine_phosphate_has_shown_apparent_efficacy_in_treatment_of_COVID_19_associated_pneumonia_in_clinical_studies_

    https://www.clinicaltrialsarena.com/news/coronavirus-covid-19-choroquine-data/

    https://www.unboundmedicine.com/medline/research/Chloroquine_AND_(Coronavirus_2019_OR_COVID-19_OR_SARS-CoV-2)

    http://www.koreabiomed.com/news/articleView.html?idxno=7428

    There are many more, just do some Google searches.

    Reply

    1. With all due respect, Comments expressed With clarity and in a succinct manner and impartial tone carry a strong and thoughtful message. Understandably passion and concern for the issue is running high – we all want to make the best decisions for our health and well being as possible.

      Reply

  6. I very much appreciate the information I am receiving from you. I work for a court system and have several people I work around and i talk to people all day at the window and receive papers. They have yet to let anyone off. So I needed as much information I could get from you.

    Reply

  7. Thank you for this information, I also have Lupus SLE. Ive been off work due to hurting my back. Today will be my first day back on modified duties. I work at a hospital. I’m scared, scared for everyone. Stay safe 💜

    Reply

  9. I’m worried as I take hydroxychloriquine and I’ve encountered shortages and have been waiting to get my prescription. Will those with lupus taking this drug be put first in getting it if they use it for the virus?

    Reply

    1. I was told by my pharmacist in NY that they were working under guidelines to prioritize existing Plaquenil patients . It may be determined state by state, but also by how often the President mentions it as a viable treatment

      Reply

  10. Never posted my remarks DAYS AGO informing here of the clinical trials going on in Europe and Asia using Plaquenil, before Trump’s press conferences. And now there are shortages of Plaquenil affecting lupus patients’ ability to obtain their medication. Not very helpful, in fact dismaying. Will you post this comment, I wonder?

    Reply

    1. Hello,

      Thank you for the comments. We appreciate your initiative in adding additional information. The WHO report states that chloroquine is a priority research area. An additional quote from the WHO article states,

      “In guidance published on Friday, the U.S. Society of Critical Care Medicine said ‘there is insufficient evidence to issue a recommendation on the use of chloroquine or hydroxychloroquine in critically ill adults with COVID-19.'”

      We appreciate your feedback and will keep updating the article as news progresses.

      -LupusCorner Team

      Reply

  12. I have systemic lupus autoimmune hepatitis and plaque psoriasis all autoimmune diseases I have been taking hydroxychloroquine for 4 years it is scary that I may not be able to get my meds

    Reply

    1. I have lupus SLE and i take Hydroxychloroquine my phamacy told me they are waiting for my insurance to ok my script. they have never done that before and i have been taking it for over 5 years.

      Reply

  13. Two family members currently are taking hydroxychoriquine (HCQ) for lupus and RA. Is there any data from anywhere in the world that shows whether anyone that has been taking HCQ has contracted Covid 19? For example, if 350,000 people in the US have contracted the desease, how many of those have been on a dose of HQC? That should be an easy answer for the CDC to determine and would go a long way in assessing the efficacy of HCQ as a prophylactic.

    Reply

  14. Hi Lupus sufferer I am on Azothyaprin Benlysta and Hydroxychloroquine because I have a severe case. Now what do I do? Unsure of anything right now? Really? This disease SLE which I have had for many years is scary and now what do I do? Meds? No meds? Huh afraid of it all.

    Reply

  15. Thank you for all the updates & staying safe as much as you possibly can. I have Lupus, I didn’t go to work since 3-26-20, my rheumatologist told me to go to work because my blood tests are normal & he cannot exempt me from work, my pcp told me to stay home for 1-2 months until this pandemic is over, I’ve to use my vacation, sick, personal time in order to get paid from my job, what do I do once this is over, also was it right that my rheumatologist told me to continue working, I guess he wants me to get sick and die ? I also have other pre-existing medical conditions

    Reply

    1. I was on the indeterminate spectrum of my DSDNA. In 2019 as I worked on strengthening my health and just started to take 200 mg of Hydroxychloroquine I got Covid Early in March. I was hospitalized with pneumonia and went home after 3 days. Covid19 pushed my body into positive DSDNA and worse autoimmune symptoms. I am so upset I didn’t have a chance to protect myself because they hadn’t yet shutdown and really say how bad Covid was. Now I am told they are not sure if I should take the vaccine. But don’t think I could handle another infection either

      Reply

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