Frequently asked questions: coronavirus (COVID-19) and lupus
Last updated: April 8, 2020
Our Health Educator Network—health-care professionals and lupus specialists who provide individualized answers—have seen their inquires triple in the last week. The following are questions they’ve been frequently asked and their answers. See also: Hydroxychloroquine (Plaquenil) and Coronavirus (COVID-19) Questions and Answers
Updated April 7. The CDC recommends that people wear cloth face coverings when they are in public places where it is difficult to stay six feet away from other people. This includes grocery stores, pharmacies, and other spaces (indoor or outdoor) where people may come into contact with one another. Recent studies have shown that some people can transmit the virus before they show symptoms or even if they never show symptoms. The coronavirus can spread by being in close proximity with other people who are talking, sneezing, coughing, even if those people are not showing symptoms.
You can make a cloth face covering at home using simple sewing skills. It is also possible to make a face covering without sewing. Cloth face coverings should be more than one layer of material but still allow for easy breathing. They should also be washable.
A cloth face covering is different from a facemask worn by medical professionals. It will help you to be safer when you must be out in public but it will not protect you completely. Please continue to follow the guidelines to stay at home as much as possible, wash your hands frequently, disinfect surfaces, and avoid touching your face.
Updated April 6. Many doctors are switching to telehealth for routine appointments or rescheduling them for a later date. If you have a routine appointment coming up and you have not heard from your doctor, call the office and ask about their plan and what you should do. If you’re going into the office for your appointment, ask about the options in place to minimize your risk of exposure to people coming in for sick visits. For instance, you can ask if you need to wear a face mask when arriving or if one will be provided for you. Maintaining hand hygiene and social distancing while you are at your appointment is also effective in reducing your risk for infection.
Consider also discussing a lupus flare plan with your provider to understand best options for you if you begin to flare and need to be seen. You can discuss options to reduce your exposure to infections while managing your flare and seeking necessary medical care.
Updated April 7. Travelling, both domestically and internationally, is not recommended right now for anyone regardless of their personal risk level. As someone with lupus, you are at higher risk of getting an infection. You are also at higher risk of becoming seriously ill if you do get an infection. Travel puts large numbers of people, often from different countries around the world, in frequent and close contact with each other. This can promote the spread of infections, such as the coronavirus. We urge you to consider and follow the CDC recommendations for your travel plans to ensure you protect your health during this outbreak.
If you’ve come in contact with someone who is positive for coronavirus, please follow CDC recommendations as well as your local health department’s recommendations for self-quarantine and reporting. If you experience a fever, cough, sneezing, and shortness of breath, report your symptoms to your health care provider – over the phone first!
Communication with your health care team is important for regular visits, through flares, and during sickness, so be sure to communicate your symptoms and status to all relevant health care providers so they can help you figure out the best course of action.
Updated April 6. Social distancing is a public health measure that is recommended to reduce the passing of known infections, such as the coronavirus. This practice protects both you and members of your community. For work, communicate your requirements to your employer to see if there are ways to accommodate working from home. If possible, plan ahead by making arrangements to work from home in anticipation of the need for social distancing.
For everyday needs, such as grocery shopping, consider using a delivery service or asking a neighbor, family member, or friend to run those errands for you. For your medications, call your health care provider to see if it’s possible to get extra supply of your medication in case you need to stay home for a while.
While this time might feel isolating, it’s important to know that you are not alone. There are ways to manage stress and anxiety and resources that can help. Calling friends, using video chatting services, and using other technology to stay in touch with friends and family can be very helpful to keep your spirits up. You can also take this opportunity to find new friends and support with LupusConnect, our online support community.
It’s important that you emphasize to your friends, colleagues, neighbors, and anyone who might come in frequent contact with you or your environment that lupus puts you at higher risk from infections like coronavirus. This will let them know to be very careful with their own hygiene and health habits to ensure they don’t put you at further risk.
Create and practice a speech that briefly explains lupus as an autoimmune disorder that can prevent you from properly fighting off infections like coronavirus. You can write different versions of the speech that include different levels of detail, based on what you’re comfortable sharing with various people. If you need help putting together your speech, use this worksheet to guide you. Remember -- there’s no shame in advocating for yourself. In fact, it can save your life.
We are still learning about how the coronavirus affects different age groups. While adults make up the majority of the known cases of the virus, children can still become infected with it, transmit it, and develop symptoms.
During this time of heightened health concerns, health care providers may have a high number of calls they have to respond to. Their office hours may also be impacted by the coronavirus. Continue to reach out until you receive a response. If you have an urgent health care need unrelated to the coronavirus, there may be urgent care facilities that can assist you while you wait to hear back from your primary care doctors. Check in by phone first, though, to see if it is necessary and safe for you to come to the facility.
Discoid lupus is still an autoimmune disease, which means you’re still at a higher risk for serious complications due to the coronavirus. We recommend taking additional caution and following the CDC’s guidelines for high-risk groups.
Lupus is a chronic autoimmune disease -- that means that your immune system is dysfunctional and attacks your healthy tissue. This can make the immune system less effective at fighting infections. Medications that suppress the immune system -- which people with lupus often take -- can also limit your body’s ability to respond to infections. As a result, people with lupus are less able to fight off bacteria and viruses, like COVID-19. When people with lupus do get sick their illness may also trigger a lupus flare. People with lupus may also have other conditions that put them at higher risk for serious illness from coronavirus such as diabetes, cardiovascular disease, kidney disease, and a weakened immune system.
The Centers for Medicare & Medicaid Services (CMS) announced that people who are on Medicare will not be required to go to a physician’s office or other facilities to receive their Benlysta infusions. Instead, from March 1st forward, they will be able to receive Benlysta infusions in their home and these infusions will be covered by Medicare Part B.
At-home infusions are not required -- people are still able to get the infusion in-office if they and their doctor agree it is medically and physically safe to do so. Please contact your doctor to create an arrangement that is best for you.
Currently, the CDC is not aware of any scientific evidence that indicates coronavirus symptoms worsen due to non-steroidal anti-inflammatory drugs (NSAIDs). The CDC will continue to monitor the situation and review new information as it comes in.
Currently, the CDC is not recommending that people prescribed angiotensin converting enzyme inhibitors (ACE-I) or angiotensin receptor blockers (ARB) for cardiovascular disease stop taking either. The CDC is not aware of any scientific evidence that indicates ACE-Is and ARBs heighten the risk of contracting coronavirus or heighten its severity. All changes to your medications should be made by your prescribing doctor. The CDC will continue to monitor the situation and review new information as it comes in.
Most Americans earning less than $75,000 annually will receive a one-time cash payment of $1,200 -- this includes most people who are receiving Social Security disability benefits.
The bill also puts funding toward public health efforts, including $100 billion to hospitals responding to the coronavirus, $11 billion for diagnostics, treatments and vaccines, and $80 million for the U.S. Food and Drug Administration to expedite approval of new drugs.
The bill reauthorizes a critical telehealth program to expand the capabilities of virtual doctors appointments and requires all private insurance plans to cover COVID-19 treatments and vaccines, as well as make all coronavirus tests free.
It is difficult to anticipate what may happen with the ongoing and rapidly changing news about the coronavirus. The best thing you can do for yourself is to prepare ahead of time as much as possible. Here are some tips on how to protect your financial stability during the coronavirus crisis.
Make a financial plan for your household
A financial plan allows you and your family to prepare for any financial hardships or changes -- expected or unexpected -- that may occur. Read more about preparing a financial plan.
Know the status of your disability benefits
Although the Social Security Administration field office network is closed, services, including disability benefit claims, are still available using the agency’s toll-free line: (800) 772-1213. Read more about Social Security benefits during the coronavirus crisis in the questions above.
Know what is covered under the stimulus package
Under the coronavirus stimulus package, private insurance plans are required to cover COVID-19 treatments and vaccines, as well as make all coronavirus tests free. Read more about the stimulus package here.
If you experience job loss, know your health insurance options
If you received health insurance through your job and lost the job as a result of the coronavirus -- or for any other reason -- take a look at this resource for potential coverage options. There are also organizations that offer options for low-cost or free medical care.
If you are struggling to pay for your prescriptions, there are several programs that can help you with that. Read more about tips for refilling your prescription during the coronavirus crisis.
Know your options for housing and utilities assistance
If your income has been disrupted by the coronavirus or impacted by health-related issues, these are a few organizations that offer emergency assistance with rent, mortgage, gas, electric, phone, and water bills.
Though the Social Security Administration field office network is closed to the public due to the coronavirus, services are still available using the agency’s toll-free line: (800) 772-1213. Benefit claims, checking the status of an application or appeal, and requesting a replacement Social Security card can all be handled on the agency’s toll-free line or website. Payments to Social Security beneficiaries are not affected.
Social Security field offices will only offer in-person services for the following:
- Reinstatement of benefits in dire circumstances
- Assistance to people with severe disabilities, blindness, or terminal illness
- Assistance to people in dire need of eligibility decisions for the Supplemental Security Income or Medicaid eligibility related to work status.
To access those in-person services, you must call in advance.
For more, read our information about Social Security Disability.
- Coronavirus (COVID-19) and Lupus: a single point for all information about the coronavirus and how it affects people with lupus.
- Hydroxychloroquine (Plaquenil) and Coronavirus (COVID-19) Questions and Answers
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