Meanwhile, months of hype, hope, and controversy about the common lupus drug hydroxychloroquine (Plaquenil) and its unproven ability to prevent or treat COVID-19 has led to stockpiling, shortages, and difficulty getting prescription refills for many people with lupus. In a survey of 334 people with lupus living in the United States who had been taking hydroxychloroquine for more than 11 years, on average, 31 percent reported they were having trouble getting the drug and 5 percent simply couldn’t get it, according to a May report from the Lupus Research Alliance. Research now shows that it’s not effective against COVID-19 and the U.S. Food and Drug Administration (FDA) revoked the emergency approval of the drug for treatment of COVID-19 this month. RELATED: Research Updates on Vaccines and Treatments Under Investigation for COVID-19 As states cautiously (or not-so-cautiously) reopen, you may have new questions and concerns about returning to work, school, and regular activities or even seeing your doctor in person. To address your top concerns, Everyday Health asked Dr. Costenbader (who is also chair of the Lupus Foundation of America’s medical-scientific advisory council) and Michelle Petri, MD, professor in the division of rheumatology at Johns Hopkins University and codirector Hopkins Lupus Pregnancy Center in Baltimore, to weigh in about what people with lupus should know about their COVID-19 risks. For the latest research on COVID-19 and patients with rheumatic diseases, the COVID-19 Global Rheumatology Alliance has more information on its website.
1. Are people with lupus at higher risk for both getting infected with COVID-19 and for more severe symptoms if they do come down with it?
Yes: Lupus itself is a chronic autoimmune disease that causes your immune system to attack healthy tissue. This dysfunction can make your body less able to fight infections. “Lupus is a disease with a mixed-up immune system,” Dr. Petri says. “People with lupus are at higher risk for a variety of viral infections, so we are worried they are also at greater risk for COVID-19.” In addition, people with lupus often take immunosuppressant drugs, such as Sterapred (prednisone), Cytoxan (cyclophosphamide), Restasis (cyclosporine), Rituxan (rituximab), and others that reduce immune system activity. This can make the immune system less effective at fighting infections, according to the Lupus Foundation of America. Meanwhile, people with lupus may have some of the same chronic health conditions that raise everyone’s risk for serious COVID-19 complications, such as diabetes, high blood pressure, and kidney disease.
2. Should I stop taking immunosuppressants or other lupus medications because they heighten my COVID-19 risk?
Don’t make any changes on your own, Costenbader says. Talk with your doctor if you’re concerned about your immunosuppressant, but remember that its important for preventing lupus flares. And there’s no need to be concerned about other drugs you may take for lupus, she says, such as nonsteroidal anti-inflammatories (NSAIDs) like ibuprofen (Advil, Motrin), which some people with lupus take to ease pain and inflammation; angiotensin-converting enzyme (ACE) inhibitors, used to lower blood pressure; and angiotensin receptor blockers, used when lupus attacks the kidneys. “There were early concerns that these could worsen COVID-19, but they do not,” she says. Meanwhile, if you receive infusions of Benlysta (belimumab) as part of your lupus treatment, Costenbader says its likely very safe to keep having them at an infusion center or doctor’s office. If you don’t want to go out, home infusion may be another option. There is also an injectable form of the drug that you administer yourself under the skin. Ask your doctor if either of those options might be more appropriate for you if you are concerned.
3. Will taking hydroxychloroquine for lupus protect me from a COVID-19 infection or from severe complications?
No: “The hydroxychloroquine studies have not proven any protection,” Petri says. A study of 821 people, published June 3 in The New England Journal of Medicine, found taking the drug didn’t lower risk of COVID-19 infection compared with people taking a placebo (everyone in the trial reported a high- or moderate-risk exposure to someone with a confirmed case of COVID-19). On June 15, the FDA revoked emergency authorization for its use against the virus, saying that hydroxychloroquine and chloroquine were “unlikely to be effective in treating COVID-19.”
4. What can I do if I have trouble refilling my prescription for hydroxychloroquine?
With reports suggesting that as many as one-third of Americans with lupus who take the widely-prescribed medication hydroxychloroquine may be having difficulty getting refills (according to the previously mentioned Lupus Research Alliance poll) concern over the issue is understandable. The FDA reported shortages as the drug was touted early in the pandemic for the prevention and treatment of COVID-19. Consumers rushed to pharmacies and hospitals stockpiled it. But, Costenbader says the situation has not been as dire as it could have been. “We’re finding the shortage isn’t as severe as expected, which is good news,” she says. If you are having difficulty getting your prescription refilled, she recommends trying other pharmacies in your area, including large chain drugstores like CVS and Walmart. The Lupus Foundation also suggests asking your doctor to write a prescription for a 90-day supply, so you need fewer refills. Your health insurance company may allow you to request your refills earlier than the allowed date, too. And talk to your pharmacist. She may be able to help you find it at another pharmacy.
5. If I get COVID-19 will I experience different symptoms than others because I have lupus?
If you take an immunosuppressant, especially high-dose prednisone, you might not develop a fever if you have a COVID-19 infection, Costenbader says. Also noteworthy: Some COVID-19 symptoms mimic manifestations of lupus, such as chest pain, fever, and even “COVID toes” — which are blue or purple lesions on toes that can look like vasculitis and can develop in people with lupus, as well as people with COVID-19. The bottom line: Don’t try to figure it out on your own. Contact your doctor quickly about any potential symptoms.
6. What should I do if I have symptoms that I suspect might be COVID-19?
Call your doctor or your healthcare team right away – don’t delay, the Lupus Foundation recommends. Monitor your symptoms and check in regularly with your healthcare provider, as often as they recommend and immediately if you have new symptoms or your condition seems worse. Symptoms can accelerate from mild to severe quickly. Get medical help immediately if you have any of these emergency warning signs: trouble breathing, persistent pain or pressure in the chest, new confusion, or inability to rouse or bluish lips or face, the CDC advises. Call 911 or call ahead to your local emergency room to let them know you need help for yourself or someone else with suspected COVID-19.
7. As states ease stay-at-home orders and reopen, is it safe for me to go back to work or for my child with lupus to go to daycare, school, or college?
“There’s not one answer. Talk with your doctor or your child’s doctor about your individual situation and the best plan for you,” Costenbader recommends. “Lupus is not one-size-fits-all.” For someone with a mild case who does not use immunosuppressant medication and works in a job with little exposure to others, the risks will be different from someone who has more severe lupus or other health conditions, like diabetes or high blood pressure, that increase risk for COVID-19 infection and worse complications. Whether you live in a state or community where the infection rate is rising or falling also affects your risk (and whether it’s safe for you to return to various activities). “Patients have been calling me with these questions a lot lately. You have to weigh all the variables. Your doctor can help,” Costenbader says. If you do return to work, be vigilant about wearing a mask, maintaining a distance of six feet between yourself and others, washing your hands thoroughly and frequently, and wiping down surfaces in your office or cubicle or at your desk that others may also have touched. “We recommend masks, social distancing, and handwashing as people with lupus return to the workplace,” Petri says. RELATED: Self-Care Tips for Being Stuck at Home During the Coronavirus Pandemic
8. What about shopping, going to restaurants, or visiting family?
Wear a face mask, maintain social distancing, and wear gloves or sanitize or wash your hands immediately after leaving the grocery store or pharmacy, Costenbader recommends. “Get what you need, pay, and leave,” she adds. “Don’t linger. We’re learning that the grocery story may not be as risky for infection as people feared. But you may want to think twice about going to the mall just to walk around and look in the stores. Outdoor shopping may be safer because the air is circulating, but still wear a mask.” RELATED: Food Safety and COVID-19: A Guide for Handling Groceries and Takeout Be smart about visiting family. “If you can get together outdoors, wearing masks, and staying six feet apart, that would be best,” she says. “And be especially mindful of older relatives, age 65 and over. Their risk for infection and severe symptoms is higher. You don’t want to expose them to the virus.”
9. Is it okay to travel now?
“I personally do not recommend any nonessential travel,” Petri says. She adds that when it comes to air travel, you’re required to be inside with others for an extended period of time and it may be difficult to social distance. RELATED: Is It Safe to Travel This Summer? The Lupus Foundation of America also recommends against domestic or international travel currently for people with lupus of any risk level.
10. What should I do if I’m exposed to someone who has COVID-19?
The Centers for Disease Control and Prevention (CDC) recommends staying at home for 14 days after your last exposure, maintaining social distance at all times, and staying alert to signs of infection. Take your temperature twice a day and watch for symptoms including fever or chills, cough, shortness of breath, fatigue, muscle or body aches, headache, new loss of taste or smell, sore throat, congestion or a runny nose, nausea, vomiting, or diarrhea. Costenbader also recommends people with lupus get in touch with their doctor if they have been exposed to someone known to have COVID-19. “[He or she] will go through your medications with you to see if anything, such as immunosuppressants should be changed. Your doctor may even recommend getting tested for COVID-19 right away,” she says. Stay in touch with your doctor throughout your quarantine and call immediately if you have any potential symptoms.
11. I haven’t seen my doctor for a few months due to the pandemic. Is is safe to make an appointment and go into her office?
Call your doctor. If you’re feeling well and your lupus is stable, a virtual telemedicine visit using your smartphone, laptop, or home computer may be all you need. If your condition is flaring up, seeing your doctor in person may be preferable, Costenbader says. She recommends making that decision with your doctor about whether to have an in-person or telemedicine visit. “It also depends on what COVID-19 is like in your area and how suppressed your immune system is,” she adds. Healthcare practitioners are taking precautions to lower risk for exposure. “Our out-patient clinics are being careful to protect everyone’s safety,” Petri notes.
