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:
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:
“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.”
People with lupus are generally prescribed medications from a few different categories. Common treatments for lupus include:
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.”
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.
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.
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:
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 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.
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.
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:
How are you getting through this trying time? Have questions or recommendations? Post your thoughts or questions below.