Systemic lupus erythematosus (SLE) is a chronic autoimmune condition, which means your immune system isn’t working properly. If you have lupus, you might be concerned about COVID-19.
According to the Lupus Foundation of America, having lupus means you’re at higher risk for infections, including an infection with the new coronavirus, and for serious complications if you develop COVID-19.
Like other autoimmune disorders, lupus involves an immune system that mistakenly attacks healthy tissue. Lupus can also damage the heart, kidneys, or nervous system. Fighting off a virus may be a challenge, especially if you take immune-suppressing medications.
Getting an infection can trigger a disease flare-up. Also, the risk of complications rises if you have coexisting conditions, such as heart disease, kidney disease, or diabetes.
Hydroxychloroquine (Plaquenil) and chloroquine (Aralen) are antimalaria drugs that doctors also prescribe for lupus.
In early 2020, the Food and Drug Administration (FDA) approved, then later
With ongoing concern over COVID-19, increased demand may be an issue. If filling your prescription is a problem:
- Ask your doctor for a 90-day rather than 30-day supply.
- Request refills well before you expect to run out. Due to COVID-19, some insurers are allowing early refills.
- If your pharmacy is running low, ask the pharmacist about other options.
- Call other pharmacies to check their stock. Before ordering, make sure they’re in your plan’s network and, if not, what your out-of-pocket expenses would be.
- Research mail-order options with your preferred pharmacy.
- Consult with your insurance company on other mail-order options. Check out the FDA’s tips for
safely buying medications online.
- Discuss temporary dosage reductions with your doctor if your supply becomes limited.
Both lupus and COVID-19 involve a variety of symptoms. Individuals can experience them in very different ways. Symptoms they share include:
- muscle pain
- general weakness
Some other common symptoms of lupus may include:
- appetite loss
- weight loss
- joint pain
- skin issues, including “butterfly rash” on the face
- color changes of hands (Raynaud’s phenomenon)
Lupus can also cause:
- hair loss
- sores in the nose, mouth, or on genitals
- cognitive impairment
Additional symptoms of COVID-19 can include:
- shortness of breath
- chills, shaking
- severe headache
- sore throat
- loss of taste or smell
- pain or pressure in the chest
If you have symptoms of COVID-19, contact your doctor right away to schedule a telehealth visit. Your doctor will advise you on getting tested.
If you test positive for COVID-19, continue to take your prescribed lupus medications. Consult with your doctor about the next steps. Immediately report new or worsening symptoms.
Isolate yourself. If you live with others, isolate within your home, and wear a mask when you can’t maintain separation. Everyone in your home should practice frequent handwashing.
Remain in isolation until:
- At least 14 days since symptoms began.
- You’ve gone 3 days fever-free without taking fever-reducing medication.
- You no longer have respiratory symptoms, such as shortness of breath or cough.
Most people who test positive for an infection with the new coronavirus will be contacted by a public health officer. They will tailor their recommendations for isolation to your specific circumstances, health, and living arrangements.
Having two negative tests taken at least 24 hours apart typically means it’s safe to end isolation.
In some communities, it may be difficult to get tested or to get quick results. If unsure, first check with your doctor, county public health officer, or both before going out in public.
Registries for rheumatology patients who develop COVID-19
Two registries are currently collecting data* on rheumatology patients who develop COVID-19:
According to data collected so far, people with lupus aren’t developing more severe forms of COVID-19. One exception is if you’re taking more than 10 milligrams a day of prednisone. This may put you at risk for more severe symptoms of COVID-19.
It’s also worth noting that if you’re currently taking hydroxychloroquine, it won’t protect you from contracting the new coronavirus or developing COVID-19.
*Data is observational (contributed by rheumatologists around the world). The registry population is skewed toward more severe cases of disease.
The more time you spend in close interaction with others, the more you risk contracting an infection with the new coronavirus, and thus developing COVID-19.
The most important tool for COVID-19 prevention is limiting time in person with other people.
When you must go out, follow these steps:
- Wear a mask and avoid those who don’t.
- Keep at least 6 feet from others.
- Avoid touching your eyes, nose, mouth, or face.
- Carry hand sanitizer and use it after touching surfaces.
- Avoid crowds, especially indoors.
- Don’t shake hands.
- When maintaining 6 feet is unavoidable, like at a doctor’s visit, wear a mask and eye protection, or a face shield.
Avoid contact with someone who’s sick. If you have lupus, assume you’re at increased risk. It’s perfectly reasonable to let people know this.
Managing a chronic disease can be stressful in the best of times, let alone a pandemic.
There are high levels of anxiety and depression among people with lupus, especially now. The uncertainties of COVID-19 can pile on, possibly increasing the chances of a flare-up. That’s why it’s so important to be mindful of your mental health at this time.
Need some support? Check out our COVID-19 mental health guide.
COVID-19 has had a major impact on social connectedness. Isolation and loneliness can harm your health, and right now you need to protect your physical and mental health.
Take advantage of modern technology. Phone calls, video chats, and online meetings can help you stay in touch with people you miss. Put the word out that you’re open to virtual visiting.
Now might be a good time to consider joining a lupus support group, too. These organizations can help:
When you first learned you had lupus, you probably did a lot of research and figured out how to tell a reliable source from a suspicious one. Use that same logic to parse COVID-19 news.
Seek out trustworthy information without dwelling on the pandemic. Limiting your news consumption can keep you informed without escalating your stress level.
Spending a lot of time at home can make it difficult to get motivated, but it’s important to exercise your body and mind.
Get some physical activity every day. There are plenty of exercise apps to help. Walking outside is good exercise that can also give you a change of scenery. It’s also easier to maintain physical distance when you’re outdoors.
Work those creative muscles, too. Is there a hobby you’ve been neglecting? A great work of literature you’ve been wanting to tackle? Work on a puzzle, play a game, or journal your thoughts to keep those creative juices flowing.
Rest and recharge
Stress can gain on you, so be proactive. Create a cozy nook you can dedicate for calm reflection. Learn how to meditate or practice deep breathing.
There are many meditation apps that can help get you in the right frame of mind. Activities like yoga and tai chi also aid relaxation.
Create a routine
Eliminate the motivation problem with routine. If you know it’s exercise time or meditation time, you’re more likely to do it. Giving structure to your day can help keep you from focusing on things that stress you out.
Eat healthy, noninflammatory foods
Often when we’re stressed, we crave comfort foods. These typically contain high amounts of sugar and other inflammatory ingredients, which may trigger a flare-up.
Consider adopting an anti-inflammatory diet during this time. Not sure where to start? Our anti-inflammatory diet guide can help.
Lupus is a chronic autoimmune disease that could increase the risk of contracting the new coronavirus that causes COVID-19, or developing complications from the disease.
There are ways to lower your chances of infection. You can also take steps to manage stress and keep your body and mind balanced while weathering these times.
If you have symptoms of COVID-19, isolate yourself from others, and call your doctor right away.