I take hydroxychloroquine for an autoimmune disorder—but you shouldn’t be taking it for COVID-19

Every night before bed, I brush my teeth, wash my face, and pop 400 mg of hydroxychloroquine. Nope, I don’t have COVID-19; I have arthritis.

I first learned about the drug in January of 2019. After a few months of increasing pain and decreasing mobility in my fingers, hands, and wrists, I found myself in a chair across a desk from a rheumatologist. I was an otherwise healthy 30-year-old woman—so, I wanted to know, why couldn’t I wring out my wet hair or put my socks on without excruciating pain? After a physical exam and a blood test, my doctor determined that I most likely had a form of inflammatory arthritis and would need to start taking medication to curb the symptoms. There was a good chance I’d be taking this medication long-term. His recommendation: hydroxycholoroquine.

Unless you’re one of the 2.8 million Americans diagnosed with lupus or rheumatoid arthritis—and even if you are—there’s a good chance that you first heard about hydroxychloroquine in late March, when President Donald Trump trotted out the drug, which was invented to treat malaria and is now used for some autoimmune conditions, as a potential “game changer” in the fight against COVID-19. A statement from the FDA soon followed, stating that, despite the president’s enthusiasm, hydroxychloroqine and its sibling anti-malarial, chloroquine, “have not been proven safe or effective for treating COVID-19.” And what’s more, “serious and potentially life-threatening heart rhythm problems…have been reported with their use for the treatment or prevention of COVID-19.”

But that was hardly the end of that. On Monday, Trump announced that he has been taking hydroxychloroquine as a preventative measure, even though he says his tests for the coronavirus have come back negative. “All I can tell you is so far I seem to be OK,” Trump said, reports the New York Times. “What do you have to lose?”

Medical and public health officials were again quick to point out that recent clinical trials of hydroxychloroquine to treat COVID-19 have not shown clear benefits, and in fact, individuals infected with COVID-19 may well have a lot to lose should they take the malaria drug without recommendations from their doctors.

Of Trump’s statement, Steven E. Nissen, MD, the chief academic officer of the Miller Family Heart, Vascular & Thoracic Institute at the Cleveland Clinic, told the Times, “My concern would be that the public…believe that taking this drug to prevent COVID-19 infection is without hazards. In fact, there are serious hazards.” The Times also reports Eric Topol, MD, a cardiologist and the director of the Scripps Research Translational Institute in La Jolla, California, as saying it’s a “very bad idea” to take hydroxychloroquine as a preventative medication, citing the risk of a potentially fatal arrhythmia associated with use of the drug. “It could happen to anyone,” he said. A large observational study of the use of hydroxychloroquine and chloroquine published in the journal The Lancet on May 22 seems to support these concerns, finding, “Each of these drug regimens was associated with decreased in-hospital survival and an increased frequency of ventricular arrhythmias when used for treatment of COVID-19.”

As someone who has been taking hydroxychloroquine for 16 months, these warnings of “serious hazards” and fatal heart conditions from doctors with fancy credentials piqued my interest—and concern. It’s abundantly clear that taking the medicine for COVID-19—either as a treatment or preventative measure—is far from doctor-recommended, but should *I* be concerned? I called up my rheumatologist to ask.

What are the standard side effects of hydroxychloroquine?

My doctor unfortunately didn’t return my call by deadline. But I was able to snag some time with H. Michael Belmont, MD, a rheumatologist at NYU Langone Health and co-director of the hospital’s Lupus Center.

First off, he tells me, hydroxychloroquine isn’t considered risky or controversial for patients diagnosed with lupus or inflammatory arthritis. “All patients with systemic lupus should be on hydroxychloroquine unless they have an absolute contraindication,” says Dr. Belmont. “Two hundred thousand Americans with lupus [are diagnosed each year]; 80 to 90 percent should be on the medication.” This is because it’s a “background medication,” he says. It has the ability to reduce the arthritic and skin issues associated with lupus; one study showed it reduced mortality rates for those taking it; and it “has additive properties with other medications.” (For what it’s worth, hydroxychloroquine is used less frequently to treat arthritis—in about 10 percent of cases, Dr. Belmont says—but that’s because it’s a more “modest” drug, and additional medication is often necessary to curb symptoms.)

“Two hundred thousand Americans are diagnosed with lupus [each year]; 80 to 90 percent should be on hydroxychloroquine.” —H. Michael Belmont, MD

But even still, before beginning a trial course, Dr. Belmont discusses the risks and side effects with his lupus patients. “It’s shared decision-making. As a clinician, you explain why you think the patient should try the medication and you mention the most common and most severe side effects,” he says. “But ‘most common’ still means they’re rare.” How rare are we talking? “I’ve given hydroxychloroquine to about 40,000 women in 35 years [according to the Lupus Foundation of America, 90 percent of people living with lupus are women]. But let’s take 100 by way of example. Five years after they start, 90 to 95 of the 100 are still on the medication because none of them ran into an intolerance or serious reaction,” he says.

For hydroxychloroquine, this discussion of side effects includes a possible allergic reaction (at which point Dr. Belmont would recommend his patient stop taking the medication because it could develop into something more severe), a skin rash, indigestion, and temporary blurred vision. More severe—and even rarer—side effects include retinal maculopathy (or issues associated with the eye’s macula) after years of use, or, rarer still, cardiac issues. This last consideration, he says, is a new addition to the conversation. “In the short term, this issue of hydroxychloroquine affecting the heart electrical system in a manner that can lead to an arrhythmia is not really an issue in lupus patients. Up until this COVID epidemic, I didn’t really mention it [to patients] because it’s really not a clinically relevant issue.”

This tracks with my own experience: My doctor said I’d need to get a baseline eye exam before beginning to take hydroxychloroquine and then schedule yearly appointments with an ophthalmologist to monitor for signs of macular degeneration. But that was the biggest potential red flag he raised; to my memory, we didn’t discuss heart issues at all. And to date, I haven’t experienced any side effects of taking the medication.

But just because hydroxychloroquine is safe to use for its FDA-approved purposes doesn’t mean the general population should beg their doctors for prescriptions “just in case.”

The importance of clinical trials

Dr. Belmont raises two main areas of concern regarding Trump’s cavalier approach to taking drugs for unproven reasons. The first is that, without proper clinical trials in place, it becomes impossible to assess the treatment’s efficacy and risks.

“As a clinician scientist, I think there’s enough information and data to argue for the study of hydroxychloroquine in three settings: PrEP (pre-exposure prophylaxis, or action taken to prevent a disease prior to exposure), PEP (post-exposure prophylaxis), and active treatment,” Dr. Belmont says. “But you should only do it in an Institutional Review Board (IRB)-approved trial. This is a formal setting where you have an active treatment group, you have a control group, and you’re providing an opportunity to analyze the data to answer a specific hypothesis. If you [use a drug] absent a clinical trial, you don’t really have the opportunity to, in an organized, systematic way, get data, and it could lead you to the wrong conclusion in either direction.”

Another not-small issue that arises if you skip the clinical trial phase of testing a new treatment is safety. “When you do a clinical trial, there’s an obligation of the principle investigator and all the other parties that go into the study to monitor closely for side effects, toxicities, and risk,” Dr. Belmont says. “You are required to report what are called ‘treatment-emergent adverse events.’ During the trial period, if there’s an adverse effect that emerges, you have to report it.”

Dr. Belmont’s second concern is one shared by many people currently taking hydroxychloroquine (present company included).

Widespread use of hydroxychloroquine for COVID-19 could lead to shortages of the drug

“Willy-nilly use of hydroxychloroquine for PrEP [such as how Trump is taking it] in large numbers of the population could create a shortage for the very patients for whom the FDA and the scientific community knows that it works, which is lupus and rheumatoid arthritis patients,” says Dr. Belmont.

We already saw a temporary shortage of hydoxychloroquine in March, Dr. Belmont confirms, until some states issued executive orders that barred pharmacists from dispensing it to anyone not involved in a clinical trial or whose physician attested the drug was ordered for lupus or inflammatory arthritis. When early trial results proved to be less promising than hoped, general interest in the drug waned, but Dr. Belmont says that Trump’s announcement this week could cause another run on the drug.

Annie (who requested I withhold her last name to protect her privacy), 31, was diagnosed with the autoimmune condition Sjogren’s syndrome when she was a 23-year-old graduate student. She was prescribed Plaquenil (the brand-name version of hydroxychloroquine) almost right away. And, counter to my experience, she says she soon started experiencing unwanted side effects, including hair loss, fatigue, stomach problems, and general weakness. “It felt like it took effort to pick my legs up to move; to walk across the room felt like carrying sand bags,” she says.

After seven yeas of weighing the medicine’s negative side effects against the disease’s symptoms (which can also include hair loss and fatigue), Annie decided to stop taking Plaquenil. She’s been off the meds for months now, but even still, she says the news of Trump’s endorsement of the drug for COVID-19 sent her into a spiral of anxiety.

“When I started hearing about all the shortages and how people couldn’t get their prescriptions filled, I started panicking.” —Annie, Sjogren’s syndrome patient

“My first thought when I heard hydroxychloroquine could potentially be used to treat COVID-19 was that it would be really exciting if they found a treatment that worked,” says Annie. “But when I started hearing about all the shortages and how people couldn’t get their prescriptions filled, I started panicking. Even though I hadn’t been taking the medicine, I was like, ‘Should I call my doctor and have her write a prescription just so I can have it in case I have a flare? What if I really need it?’ It made me into a nervous wreck for a little bit.”

Annie’s reaction is familiar to me—when I heard news of the hydroxychloroquine shortages back in March, I refilled my prescription sooner than I needed to, just to make sure I had enough on hand should the pills be more difficult to find. Just look at how hard it is to get toilet paper! I thought. And I can’t order my medicine in bulk from totalrestroom.com.

As Annie’s panic ebbed, she found a new wave of feeling take its place. “It’s hard to put into words,” she tells me. But what she describes sounds a lot like disappointment—in our president and in our country. “It’s just so disheartening how people completely disregard other humans who need the medication to survive. They need it to literally live, and these people are stocking up because, ‘Why not?’ It’s so selfish,” she says.

Before I hang up the phone with Annie, I ask if she has anything she wants to add on the topic. “Nobody at my work knows the specifics of my medical situation,” she says. “They know that I have a lot of doctor’s appointments and I miss time for various procedures, but they don’t know about what medicine I take.” At first, it seems like a non-sequitur. Until I realize, this is the whole point, the heart of the issue. “People don’t realize how many people are affected by autoimmune conditions, how many people might need this medicine, how wide-reaching the consequences are,” she says.

We might never fully know the full impact our actions—staying home, wearing a mask, saving medicine for those who truly need it—have in preventing a worst-case scenario. But we do know that putting ourselves first, putting our wants and desires over others’ needs, is the quickest way to ensure our collective demise.

This article was updated on May 22 to include the findings of a large observational study on the use of hydroxychloroquine in COVID-19 patients.