The past several weeks have been unprecedented in our lifetime. Social distancing, sheltering in place, and overburdened hospitals are disconcerting for anyone. Add in managing lupus on top of trying to protect yourself from the novel coronavirus (COVID-19), and things can feel even more challenging.

We reached out to Dr. Siddarth Tambar, a rheumatologist and leader of Chicago Arthritis and Regenerative Medicine, to ask what people with lupus need to know in the era of COVID-19.

This article addresses:

• Whether people with lupus are at increased risk for COVID-19.
• The importance of keeping lupus symptoms under control during this pandemic.
• The impact of lupus medications on the risk of contracting COVID-19.
• Possible Plaquenil (Hydroxychloroquine) shortages.
• Tips for managing your lupus and your health.

Does Lupus Raise My Risk for COVID-19?

In a March 27, 2020 interview with MyLupusTeam, Dr. Siddharth Tambar talked about the risks of COVID-19 for people facing lupus. Dr. Tambar explained:

1. If you have lupus and are treating it with medications, you may be at higher risk for infection generally. This is the case for many people with rheumatological and autoimmune conditions. People with lupus should take extra precautions to avoid contact with people who might have COVID-19.
2. The benefits of keeping your lupus symptoms under control with medication likely outweigh the potential added risk of infection. If your lupus is flaring, it can mean even greater risks to you.
3. Finally, if your lupus has progressed to involving organs in your body — for example, your kidneys (in the case of lupus nephritis) or your heart — then you are at greater risk of infection and at greater risk of more serious complications from contracting COVID-19.

“The nature of any sort of chronic active condition is that it makes you more susceptible to any other kind of infectious issue,” explained Dr. Tambar. “From the standpoint of having worse outcomes, however, if a condition is under control, we think that the risk [of contracting COVID-19] is really the same as the general population.”

By contrast, Dr. Tambar said, “If you have an active medical condition that is affecting any kind of significant vital organ, definitely you're at higher risk.”

It is important to keep lupus symptoms under control as much as possible. In an interview with the Lupus Foundation of America, Dr. Ashira D. Blazer said, “We don’t want our patients developing unstable disease right now, which might require us to put them on even more medication that might increase the risk or have them go to medical facilities or hospitals. ... It’s very important to keep a stable regimen during this time, even though it seems scary, and take other precautions.”

Do My Lupus Medications Put Me at Greater Risk for COVID-19?

People with lupus are generally prescribed medications from a few different categories. Common treatments for lupus include:

• Antimalarials, such as Plaquenil (Hydroxychloroquine).
• Corticosteroids, such as Prednisone.
• Disease-modifying antirheumatic drugs (DMARDs), such as Imuran (Azathioprine) or Benlysta (Belimumab).
• Nonsteroidal anti-inflammatory drugs (NSAIDs).

Dr. Tambar advises continuing to take your medications if you can and if your doctor feels that is the right strategy for you. He noted, “While there's a little bit higher risk being on the medication, the benefits are that your immune system is under control.” That is preferable to “having a ragingly active condition, which on its own puts you at higher risk for infections, and puts you at risk for other types of organ damage.”

Plaquenil (Hydroxychloroquine) Supply and COVID-19

Antimalarial medications Plaquenil (Hydroxychloroquine) and Aralen (Chloroquine) have been in the news lately. After President Trump cited these medications as a potential treatment for COVID-19, many people with lupus began to have trouble filling their prescriptions. And on March 29, the Food and Drug Administration (FDA) gave emergency approval to distribute these two drugs to hospitals for COVID-19 care.

Dr. Tambar noted that some of his patients are beginning to experience a shortage in Plaquenil and its generic, Hydroxychloroquine. “What I'm hearing from patients, what I'm hearing from pharmacies,” he said, “is that either they're not being given a full prescription — let's say a full 90 days [and] maybe they're only getting 30 days. In some cases, only 20 days. Or they're being told, ‘Hey, we just don't have the medication on hand. You're going to have to wait.’”

He continued, “It's challenging because we have a legitimate reason for [using Plaquenil] in a subset of our autoimmune patients. And definitely, I am starting to hear that there is some limitation in supply.”

As a result, manufacturers have recently committed to ramping up production of Hydroxychloroquine to meet the expected increase in demand. If you are concerned that shortages of Hydroxychloroquine may affect you, talk to your pharmacy and health care providers.

Corticosteroids and COVID-19

Keeping your lupus under control with medications may help you avoid having to take corticosteroids. According to Dr. Tambar, corticosteroids may be problematic for people with lupus because of the infection risk. “Steroids, at a high dose for a prolonged period of time, puts you at risk for a dramatically higher risk for infections than just the meds that we're using routinely for these autoimmune conditions,” he said.

Certain drugs, such as steroids, that have been used on a long-term basis cannot just be stopped. People have to slowly taper off of them, and this process requires their doctor’s medical input. In an interview in Creaky Joints, Dr. Nilanjana Bose warned, “Prednisone at higher doses [20 milligrams or more] can be severely immunosuppressive but they cannot be tapered off fast.”

Again, it’s important to speak with your doctor about what, if any, changes you should make.

DMARDs and COVID-19

Disease-modifying antirheumatic drugs (DMARDs) have risks of infection associated with them. However, when evaluating the risk of COVID-19, Dr. Tambar believes that an individual’s overall health matters more than the infection risk of taking a DMARD. He recommends people living with lupus consider these questions:

• Is your lupus under control? (If not, work with your doctor to use medications to bring your symptoms under control.)
• What are your other risk factors? Do you have organ involvement?
• Is your doctor able to minimize any steroids you are taking?
• Are you taking the right precautions?
• Are you being monitored safely?

The British Society for Rheumatology reminds people with lupus to consult with a doctor before making any changes to their treatments. Before stopping any medication you will want to develop a transition plan with your doctor.

NSAIDs and COVID-19

NSAIDs are often used to treat lupus. Rumors have circulated that people with COVID-19 should not take Ibuprofen, a nonsteroidal anti-inflammatory drug. Both the World Health Organization and the European Medicines Agency have debunked this myth.

Dr. Tambar cautioned people with lupus to consult their primary care physician or rheumatologist, as always, before making any changes or starting any new medications.

Is It Safe to Go to an Infusion Center?

People with lupus may need to consider whether they have to leave home to receive medications. Some treatments, such as Benlysta (Belimumab), may be given by infusion at a clinic. If that is the case for you, it is important to check with your doctor to see if there are other options available, such as an at-home injection. Take precautions in advance of any upcoming appointments, including monitoring your own health, considering how you will physically get to your appointment (your own car or public transportation), and practicing social distance by leaving space between yourself and others at a clinic.

Dr. Tambar mentioned some of the best practices in his own clinic, including minimizing routine in-person follow-up appointments, rotating staff so they are not working in the clinic for as long, and not filling the entire infusion room. Consider asking your health care provider about such precautions before your next appointment.

Tips for Managing Your Health During the Coronavirus Emergency

The U.S. Centers for Disease Control and Prevention (CDC) recommended individuals in high-risk groups avoid attending public events. The advice from the CDC is changing on a daily basis. You can find the latest updates and guidance from the CDC about COVID-19 here.

In general, if you have a fever or you are unsure if you’re experiencing symptoms of COVID-19 — or if you have any questions about how you are feeling — make sure you reach out via telephone or online portal to your health care provider. Medicare is now covering telehealth services to treat COVID-19 (and "other medically reasonable purposes").

In addition to safety measures to protect one’s health, people with lupus may want to develop a contingency plan in case they are unable to leave their home. Steps to consider include:

• Contacting your health care provider or health insurance company about obtaining an extra supply of necessary medications.
• Setting up a mail-order service for medication, if available.
• Stocking up on over-the-counter medications to treat fever, cough, and cold symptoms — as well as necessities such as tissues.
• Ordering groceries or supplies through Amazon or another delivery service to minimize public contact.
• Having enough household items and groceries on hand to be prepared to stay at home for an extended period of time.
• If you have people who come in to help, such as a relative or home health aide, making sure they are washing their hands properly and asking what steps they are taking to avoid contracting COVID-19.
• Making a plan to reach out to friends or loved ones by phone or video chat to minimize feelings of isolation. As always, MyLupusTeam offers a support group of nearly 78,000 other people facing the same conditions as you, always available online.

How are you getting through this trying time? Have questions or recommendations? Post your thoughts or questions below.