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Getting COVID-19 When Immunocompromised

If you’re immunocompromised or have underlying health issues that increase your risk for COVID-19 complications, you are likely doing everything in your power to avoid contracting the coronavirus, from staying home as much as possible to carefully wearing your mask at all times necessary.

However, with coronavirus cases surging throughout the U.S. (and many other countries around the world), it’s important to have a plan of action prepared in the case that you do get infected. This will help with your recovery and lower your chances of infecting others.

People with weakened immune systems may not be able to combat COVID-19 as well as others. It’s possible you may have a limited ability to make antibodies when you’re immunocompromised, making it more difficult to clear the virus, per Penn Medicine. However, more research is needed on this topic.

Certain underlying conditions are known to increase risk of complications. Among 8,442 adults hospitalized with COVID-19 from March 1 to May 31, 90.6 percent had at least one reported underlying medical condition, per the U.S. Centers for Disease Control and Prevention. Those most commonly reported were hypertension, obesity, metabolic disease, and cardiovascular disease.

The research on people with autoimmune and inflammatory conditions (such as rheumatoid arthritis, axial spondyloarthritis, lupus, psoriatic arthritis and psoriasis, and inflammatory bowel disease) is less clear-cut. Some research has suggested that people with systemic autoimmune rheumatic diseases may be more likely to be hospitalized and need intensive care, but other studies have found that people with most rheumatic disease patients who developed COVID-19 had mild symptoms and that very few died from it.

As research on these patient groups continues, experts generally think that for autoimmune and inflammatory patients, age (being older), comorbidities (like heart and lung disease), and taking oral corticosteroids (but not necessarily other immunosuppressant medications, like disease-modifying antirheumatic drugs and biologics), affect the risk of severe COVID-19 more than merely having the autoimmune or inflammatory condition.

But people with such health conditions who get infected with COVID-19 should be extra careful and may need to take different/extra precautions. Here’s exactly what experts recommend you do if you get COVID-19 and you’re immunocompromised, so you can recover promptly and protect those around you.

1. Call your doctor right away

Once you test positive, you should start to strictly isolate at home. However, that doesn’t mean you should skip checking in with the doctor who treats your autoimmune or inflammatory condition (such as your rheumatologist, gastroenterologist, dermatologist, primary care doctor, etc.)

“If an immunocompromised person gets COVID-19, I recommend setting up a telemedicine visit with your doctor,” says Elana Oberstein, MD, an internist with a subspecialty in arthritis and autoimmune disease at The Lennar Foundation Medical Center in Coral Gables, Florida, and senior medical director of musculoskeletal at Modernizing Medicine.

“With a diagnosis of COVID-19, we are well aware that we need to shelter in place and isolate,” Dr. Oberstein adds. “That is where telehealth comes in as a very, very useful modality to connect.”

Your doctor will be able to advise whether or not you should continue taking your current medications, including disease-modifying antirheumatic drugs (DMARDs), biologics, or other medications that affect the immune system  — but don’t make any changes to your medication regimen unless your doctor has directed you to.

The American College of Rheumatology has issued guidance on how to treat rheumatic patients who get infected with COVID-19, but it’s up to you and your doctor to make decisions about your individual care. Some recommendations include:

  • Hydroxychloroquine may be continued, but sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics, and JAK inhibitors should be stopped or held
  • For patients with severe respiratory symptoms, NSAIDs should be stopped
  • In select circumstances, as part of a shared decision-making process, IL-6 inhibitor biologics may be continued.

“Some disease-modifying drugs may be safe to continue, but it’s on a case-by-case basis,” says Dr. Oberstein, who has treated immunocompromised and rheumatic patients with COVID-19.

It’s important not to stop corticosteroids (such as prednisone) abruptly, which can cause withdrawal symptoms like severe fatigue, weakness, body aches, joint pain, nausea, loss of appetite, and lightheadedness, per the Mayo Clinic.

Your adrenal glands produce less cortisol (a hormone that’s similar to prednisone) when you take prednisone for longer than a few weeks. They need time to return to their normal function once your prednisone dosages are lowered.

Ask your doctor if you should taper off oral corticosteroids like prednisone if you have COVID-19, but don’t stop taking them without your doctor’s guidance.

2. Stay completely isolated from others

If you live with others in your household, stay in a dedicated room and away from other people and pets to the greatest extent possible, per the CDC.

It’s also important to alert any people who you may have been in close contact with that you have COVID-19, so they can quarantine and monitor their symptoms. A close contact is considered anyone who was within six feet of you for a total of 15 minutes starting 48 hours before you exhibited symptoms or tested positive for COVID-19.

Even though you’ll be at home, wear a mask (and ask your loved ones to as well) if you absolutely can’t be alone at any given point. Cover your mouth with a tissue when you sneeze, wash your hands frequently, avoid sharing personal household items with others, and disinfect high-touch surfaces in your room and bathroom.

In general, if you test positive for COVID-19, you should not be around others until all three of these criteria are met, per the CDC:

  • It’s been 10 days since symptoms first appeared
  • You’ve gone 24 hours with no fever (without the use of fever-reducing medications)
  • Other symptoms of COVID-19 are improving

People who get severely ill with COVID-19 may need to stay isolated for up to 20 days after symptoms first appear. If you are severely immunocompromised, you may require testing to determine when you can be around others. Contact your doctor for the appropriate next steps before coming out of isolation.

Those you live with should stay isolated from you for 14 days after their last contact with you or your positive test — whichever comes last, says Aditya Shah, MD, an infectious disease consultant at the Mayo Clinic.

3. Carefully monitor your symptoms

Most people with COVID-19 are able to recover at home, including people who are immunocompromised.

The CDC outlines common symptoms of COVID-19, which may appear two to 14 days after exposure to the virus:

  • Fever or chills
  • Cough
  • Shortness of breath or difficulty breathing
  • Fatigue
  • Muscle or body aches
  • Headache
  • New loss of taste or smell
  • Sore throat
  • Congestion or runny nose
  • Nausea or vomiting
  • Diarrhea

Carefully watch out for symptoms that may indicate you need medical attention. According to the CDC, serious warning signs for COVID-19 that warrant seeking emergency medical care for include:

  • Trouble breathing
  • Persistent pain or pressure in chest
  • New confusion
  • Inability to wake or stay awake
  • Bluish lips or face
  • Any other symptoms that are severe or concerning to you

However, if you’re immunocompromised, you may need to seek medical care even sooner.

“We have a lower bar than average for when we tell our immunocompromised patients to be evaluated at an urgent care or emergency room,” says Dr. Oberstein. “I tell my patients with COVID-19 that if they notice something new and different is happening — for instance, a more rapid heart rate, a more rapid respiratory rate, or anything else that’s worrisome — they need to seek medical attention.”

If you notice a new or concerning symptom and you’re not sure if you need to go to urgent care or not, ask your doctor right away. Telehealth can provide a helpful way for your physician to safely evaluate you and determine what next steps you should take.

“I’m able to see skin rashes, if patients are having a hard time completing their sentences, and any discoloration around the face that may show they’re not getting enough oxygen,” says Dr. Oberstein. “Right then and there I can direct my patients by saying, ‘I need you to seek urgent medical care right now.’”

This may also be a helpful time to make use of any health tracking devices you have, such as heart rate monitors or at-home pulse oximeters that monitor your oxygen level. They could provide helpful information to relay to your doctor.

4. If needed, take over-the-counter medications your doctor recommends

If your doctor gives you the green light, the CDC notes that you may take medications like acetaminophen (Tylenol) or ibuprofen (Advil or Motrin) to reduce fever. You should also stay hydrated by drinking water and other fluids and get plenty of rest to boost your natural defenses.

However, if these medications do not work and your symptoms are getting worse, it’s time to seek further medical care.

“If you take medication such as Tylenol for fever and see no response, that warrants emergency medical attention,” says Dr. Oberstein.

Keep in mind that the course of COVID-19 and what’s appropriate for clinical care will be different for everyone.

Dr. Oberstein says she has treated immunocompromised and rheumatic disease patients with COVID-19 who have no symptoms at all, those who have a flu-like illness for three to five days, and those who require hospitalization.

“It has run the gammut, which is why we have to look at each case individually and follow our patients almost on a daily basis, making sure they’re tracking and monitoring themselves for any changes,” says Dr. Oberstein.

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COVID-19 Clinical Guidance for Adult Patients with Rheumatic Diseases. American College of Rheumatology. April 11, 2020. https://www.rheumatology.org/Portals/0/Files/ACR-COVID-19-Clinical-Guidance-Summary-Patients-with-Rheumatic-Diseases.pdf.

D’Silva K, et al. Outcomes of Coronavirus Disease 2019 Infection Among Patients Living with Rheumatic Diseases: A Matched Cohort Study from a US Multi-Center Research Network [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/outcomes-of-coronavirus-disease-2019-infection-among-patients-living-with-rheumatic-diseases-a-matched-cohort-study-from-a-us-multi-center-research-network.

Interview with Elana Oberstein, MD, an internist with a subspecialty in arthritis and autoimmune disease at The Lennar Foundation Medical Center in Coral Gables, Florida, and senior medical director of musculoskeletal at Modernizing Medicine

Interview with Aditya Shah, MD, an infectious disease consultant at the Mayo Clinic

Key Updates for Week 48, ending November 28, 2020. COVIDView. COVID-19 (Coronavirus Disease). U.S. Centers for Disease Control and Prevention. December 4, 2020. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html.

Prednisone withdrawal: Why taper down slowly? Mayo Clinic. June 19, 2020. https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923.

Sood A, et al. COVID-19 Infection Among Patients with Rheumatic Disease on Biologic & Targeted Therapies: A Systematic Review [abstract]. Arthritis & Rheumatology. November 2020. https://acrabstracts.org/abstract/covid-19-infection-among-patients-with-rheumatic-disease-on-biologic-targeted-therapies-a-systematic-review.

Symptoms. COVID-19 (Coronavirus Disease). U.S. Centers for Disease Control and Prevention. May 13, 2020. https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html.

What to Do If You Are Sick. COVID-19 (Coronavirus Disease). U.S. Centers for Disease Control and Prevention. September 11, 2020. https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/steps-when-sick.html.

What You Need to Know About Being Immunocompromised During COVID-19. Penn Medicine. May 13, 2020. https://www.pennmedicine.org/updates/blogs/health-and-wellness/2020/may/what-it-means-to-be-immunocompromised.

When You Can be Around Others After You Had or Likely Had COVID-19. Coronavirus Disease 2019 (COVD-19). U.S. Centers for Disease Control and Prevention. December 1, 2020. https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/end-home-isolation.html.