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Fever as an Early Lupus Symptom

You may have seen recent headlines suggesting that people with lupus, an autoimmune disease that affects about 1.5 million Americans, don’t contract coronavirus because many of them take hydroxychloroquine. This information is not true, and the Global Healthy Living Foundation needs to set the record straight based on data and medical expertise.

Hydroxychloroquine — a first-line lupus therapy that is also commonly used to treat rheumatoid arthritis and other rheumatologic conditions — is currently being studied as a potential treatment for COVID-19 because of its anti-viral properties. But there is no conclusive evidence of its benefits for coronavirus yet.

During a White House briefing Saturday April 4, President Trump suggested there was research showing that lupus patients did not get coronavirus. The implication was that perhaps taking hydroxychloroquine was protecting them.

“They should look at the lupus thing. I don’t know what it says, but there’s a rumor out there that because it takes care of lupus very effectively as I understand it, and it’s a, you know, a drug that’s used for lupus,” President Trump said during the briefing. “So there’s a study out there that says people that have lupus haven’t been catching this virus. Maybe it’s true, maybe it’s not.”

It is not true.

Emerging Data on Lupus Patients and COVID-19

A couple of weeks ago, as the coronavirus pandemic was massively increasing in scale and impact, rheumatology researchers from around the globe started collaborating to collect data on patients with such conditions as lupus to answer questions exactly like this. Do patients with autoimmune conditions fare differently from COVID-19 than the general population? Do certain medications lead to better or worse outcomes?

The registry is called the COVID-19 Global Rheumatology Alliance. (The Global Healthy Living Foundation and its arthritis patient community CreakyJoints was one of its first members and advisers.) More data is being collected daily and certainly it is too early to make any definitive conclusions about COVID-19 in rheumatology patients, but the data so far show that:

  1. Lupus patients do, in fact, get COVID-19.
  2. Many of them are taking hydroxychloroquine at the time of their diagnosis.

According to information from the registry shared over the last few days on Twitter, the registry now has data on 110 patients. Most patients have rheumatoid arthritis (36 percent), followed by psoriatic arthritis and lupus (17 percent each).

On April 2 — two days before the President’s recent statements about lupus and hydroxychloroquine — the registry Tweeted: “One frequently asked question: Over 25% of patients who developed a COVID-19 were on HCQ [hydroxychloroquine] at the time of diagnosis.”

Last night, the registry tweeted: “Based on early data currently available in our registry, we are not able to report any evidence of a protective effect from hydroxychloroquine against COVID-19. A randomized, controlled trial would be the only way to study this to get a reliable answer to this question.”

Rheumatologists who treat patients with lupus are concerned about rumors suggesting patients are less susceptible to COVID-19.

Misinformation like this puts patients at risk, says rheumatologist Grace C. Wright, MD, PhD, founder and president of the Association of Women in Rheumatology (AWIR). “There is no data that hydroxychloroquine is protective against contracting COVID-19.” She, and many other rheumatologists the Global Healthy Living Foundation has spoken with over the last several days and weeks, worry that it could be a serious issue if people who take hydroxychloroquine mistakenly think they are protected from infection.

Rheumatologist Robin K. Dore, MD, clinical professor of medicine at the David Geffen School of Medicine at UCLA, shared this message on her patient portal:

To Dr. Dore’s patients who are taking Plaquenil (hydroxychloroquine), there is no evidence that this medication prevents one from developing a COVID-19 infection. This medication is now being studied to determine if it lessens the severity of the infection once a person has developed the disease. Dr. Dore urges you to continue social distancing, hand washing, and wearing a face covering when you are out in the public. Do not feel that you are immune to the virus if you are taking Plaquenil. Further updates will follow as appropriate. 

Concerns About Access to Hydroxychloroquine

Other parts of the White House briefing continued to exacerbate fears among lupus and other rheumatology patients about having access to hydroxychloroquine, which has been in short supply due to its current use as an experimental COVID-19 therapy.

President Trump urged Americans to take the medication: “What do you have to lose? Take it. I really think they should take it. But it’s their choice. And it’s their doctor’s choice or the doctors in the hospital. But hydroxychloroquine. Try it, if you’d like.”

Messages like these could further impact the availability of this crucial medication for people who take it every day to prevent complications from lupus and other conditions.

We have written before about how denying hydroxychloroquine prescriptions to rheumatology patients, which is occurring in the Kaiser Permanente health care system in California right now, for example, is dangerous and even life-threatening. We have also explained how hydroxychloroquine is used to treat lupus and other rheumatologic conditions. To reiterate some of those key points:

“If a patient has to stop taking hydroxychloroquine, they are more likely to experience a flare,” says Ashira Blazer, MD, a rheumatologist at NYU Langone Health in New York City whose clinical research focuses on lupus. “And the last thing we want is for patients not to be able to take a drug that is helping them, then flare, then require heavier immunosuppressing drugs, then be more immunocompromised, and then contract COVID-19.”

“Hydroxychloroquine is a safe, effective, and inexpensive therapy for conditions like lupus and rheumatoid arthritis,” says Dr. Blazer. “If there is a big shortage, it will exacerbate health disparities. People who need an effective and affordable drug won’t be able to get it. There is a risk of mortality, especially for minority women who are disproportionately affected by serious lupus complications, if hydroxychloroquine is not made available to our most vulnerable patients.”

Experiencing Issues Accessing Hydroxychloroquine? Tell Us

If you are a patient living with a chronic illness and are having trouble getting access to hydroxychloroquine (Plaquenil), we want to hear from you. Click here to share your story with us.

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