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The Plaquenil, COVID-19, Lupus Connection: “This drug saves lives, I’m living proof…”

Marisa Zeppieri-Caruana
Mar 23 · 8 min read

I swallowed my first small, football-shaped Plaquenil back in 2001 and it changed my life. But what do current shortages mean for COVID-19 and others who need the drug?

I swallowed my first small, football-shaped Plaquenil tablet back in 2001, shortly after being diagnosed with systemic lupus erythematosus at the age of 23. After being incredibly sick for years, I had high hopes for this tiny, white pill. Today, almost 20 years later, I sit in my library at 3 a.m. blazing through journals and research papers about the medication and consider if it might potentially be our saving grace in the fight against COVID-19.

Plaquenil: A Pharmaceutical Success Since its Inception

Plaquenil, the brand name for Hydroxychloroquine, has been hailed as one of the world’s top malaria fighting medications. Back in the 1940s, aggressive research efforts zeroed in on creating anti-malarials to help cure infected soldiers. When in the body, malarial parasites love to invade our red blood cells, and while the full scope of the mechanism of action of Plaquenil against malaria is unknown, it is believed the drug prevents these parasites from metabolizing the hemoglobin (a protein that carries oxygen) found in red blood cells.

The drug has also been recognized for its ability to suppress Toll-like receptors, which trigger crucial immunomodulatory effects in the body. And while it has been a successful heavy-hitter in the malaria fight for some time, it was also found to be effective in the 1950s in treating symptoms of rheumatic diseases such as systemic lupus and rheumatoid arthritis. By 1956, it was approved by the FDA for use in managing these diseases.

Plaquenil — A Game Changer for Lupus and Rheumatic Disease

And so, on the advice of my rheumatologist, I began my first round of Plaquenil, hopeful to be free of debilitating daily symptoms but somewhat skeptical, as I had yet to find relief from past therapies. Despite the occasional stomach upset it produced in my body and the awful, unforgettable taste of the medication if not swallowed immediately, I was pleasantly surprised. Today when I travel around the nation to speak about thriving despite lupus, I reply, “It radically changed my life,” whenever I am asked about taking the medication.

Plaquenil is oftentimes the first drug prescribed for those of us who are diagnosed with mild to moderate cases of systemic and discoid lupus, in attempts to decrease challenging symptoms that include skin inflammation, mouth and nose sores, rashes, joint pain, and hair loss. It also helps patients like me experience a decreased number of lupus flares and has the ability to reduce organ damage caused by lupus in the body over time.

Plaquenil is a powerful medication — powerful enough that when I was handed my first bottle, the pharmacist took me aside to share his words of wisdom. “You have beautiful eyes; make sure you get them checked regularly and call your doctor immediately if you notice any vision issues,” he warned. Vision loss-related side effects with the drug are rare but could occur, particularly for people who are on the drug for long periods of time and/or on high doses.

And while those of us taking the drug long-term for chronic conditions typically need to be on it daily for at least three months to reap full benefits, we are now witnessing the drug’s remarkable and quick-acting properties in the fight against COVID-19.

“Timing may be important because the longer someone has been sick, the higher the potential viral burden and risk of cytokine storm and lung damage. Also, it’s possible that different genetics make people less responsive to the drug (hydroxychloroquine).” — Jillian Richmond, UMASS Medical School Professor and Researcher

Didier Raoult’s Recent Hydroxychloroquine COVID-19 Patient Tests

Rapidly absorbed in the GI tract, a recently treated study group of COVID-19 positive patients who were given Hydroxychloroquine in conjunction with the antibiotic Azithromycin tested negative for the virus within six days, five testing negative by day three. The test study, led by Didier Raoult, an infectious disease expert from l’Institut Hospitalo-Universitaire in Marseille, involved participants taking daily amounts of 600mg of hydroxychloroquine along with 500 mg of Azithromycin on day one, followed by 250 mg thereafter. These drugs taken simultaneously in these amounts seemed to decrease viral load, concluding with its endpoint in just 144 hours. Hydroxychloroquine will now be tested to specifically treat COVID-19 in a trial called SOLIDARITY, along with three other medications, according to an announcement from the World Health Organization.

Researchers and Rheumatology Viewpoints on Plaquenil & COVID-19

As daybreak broke, I reached out to my friends in research and rheumatology — those who study the effects of Plaquenil and/or prescribe it to their patients on a regular basis. I wanted to hear their opinions and gauge their level of optimism regarding this potential treatment against COVID-19.

Jillian Richmond, Assistant Professor and Researcher at UMASS Medical School, who is currently funded to research cell migration into the skin in cutaneous lupus, was my first call. Jillian shared her “cautious optimism” regarding the data coming out regarding COVID-19 and Plaquenil.

“Potential mechanisms of action of hydroxychloroquine (HCQ) in COVID-19 and lupus. Top: In COVID-19, the virus SARS-CoV-2 can be taken up by immune cells and enters the endosome (a bubble-like structure). TLRs in the endosome recognize the virus and signal the immune cell to make immune proteins called cytokines. Too many of these cytokines causes a condition called cytokine storm that can damage lung tissue. HCQ changes the pH in endosomes, which makes it harder for TLRs to recognize the virus. As a result, they don’t signal the cell to make cytokines. HCQ has also been shown in vitro to prevent viral escape from the endosome and inhibits viral replication, thereby potentially reducing viral burden in a variety of cell types, not just immune cells. Bottom: For lupus treatment, HCQ also prevents TLR signaling, but in this case TLRs are responding to a self-molecule, hence why the condition is autoimmune. There are other proposed mechanisms of action of HCQ in both infectious and rheumatic disease, but we have highlighted similarities between HCQ in the treatment of COVID-19 and lupus.

As we discussed the test study led by Didier Raoult, she shared her thoughts on some of the challenges regarding the findings, “This was unblinded and not randomized; basically testing people just with their consent, but the problem with that is there is nothing to compare it to. For instance, if you had a placebo group and if those patients did worse, then you would know the cocktail of Plaquenil and Azithromycin is working. In Raoult’s study, they compared patients receiving the drugs to patients who did not receive the drug using retrospective chart review. But we are also looking at an ethical issue with COVID-19 — you don’t want to not help someone. People are losing their lives, so this is being used and rushed out of a necessity and it seems like they are having some success. Timing may be important because the longer someone has been sick, the higher the potential viral burden and risk of cytokine storm and lung damage. Also, it’s possible that different genetics make people less responsive to the drug.”

Plaquenil and Action Against COVID-19

And while science doesn’t exactly have all of the answers to the drug’s mechanism of action once in the body, I asked Jillian to touch on a topic she was intimately familiar with — how Plaquenil works in vitro — and her thoughts on how it may operate in someone with COVID-19. “In vitro, we know this drug prevents viral replication. What is known about its mechanism of action is it raises the pH in the endosome. Laymen’s terms? Basically, the virus is taken up by the cell and enters a big bubble-like particle where it is normally digested with acidic pH into parts that can escape from the bubble. These parts then take over the cell machinery to allow the virus to copy itself. Hydroxychloroquine raises the pH of the endosome and the virus is less able to escape and replicate.”

Regarding someone experiencing major symptoms and complications due to the Coronavirus, she added, “For patients with severe lung involvement with COVID-19, I hypothesize Hydroxychloroquine is also helping to prevent a cytokine storm from occurring.”

If the cytokine storm discussion from biology class escapes you, it is basically an overproduction of immune proteins that can accumulate in an organ, say specifically in the lungs, and do significant damage to the tissue, in addition to blocking off airways, possibly resulting in death.

My outreach continued as I searched for insight regarding COVID-19 and the use of Plaquenil, which led me to my friend Maggie Cadet, a NYC-based rheumatologist and Assistant Professor at NYU. Dr. Cadet shared that she is “surprised and excited to see this old rheumatology drug being used to help fight this virus which has affected so many individuals worldwide.” She has prescribed Plaquenil to her patients for many years “because it is a relatively safe drug when looking at the risk/benefit analysis for most people.”

Plaquenil, COVID-19 and Current Shortage Workarounds

It was Maggie’s statements that led me to my next thought. If COVID-19 is in fact treatable through the use of Plaquenil, how will the sudden increase in usage of this drug affect those living with chronic illnesses that depend on this medication?

Her advice? In the event of drug shortages due to the medication being used on a larger scale against COVID-19, “Rheumatic patients taking the drug should have at least a three-month supply on hand and speak to their physicians about getting a larger refill.”

But what we are already witnessing is the inability of many patients to refill their prescriptions. Just over this past weekend, I received over 50 messages through my NY nonprofit, LupusChick, from patients who were unable to refill this medication because of shortages. One patient had to travel over 100 miles to find the medication at a smaller, family-owned pharmacy. Countless others were turned away at the pharmacy.

But it seems steps are already being taken in light of the shortages. Ohio’s Pharmacy Board just barred pharmacists from dispensing the drug unless an individual tests positive for COVID-19 or has another medical condition requiring the medication.

If in fact Plaquenil will be fast-tracked by the FDA as a treatment for COVID-19, we must start implementing global workarounds immediately to prevent shortages so those sick with COVID-19 and those who already use the drug for rheumatic disease and other chronic illnesses have access to it. Social media has been flooded with photos of people — who have not tested positive for the virus and do not live with chronic illness — holding up their Hydroxychloroquine medication bottles along with “just-in-case” messages. Ohio pharmacists are comparing this behavior as the “medical equivalent of hoarding toilet paper.” To help combat this, pharmaceutical companies Mylan, Teva, and Novartis are already working to help prevent additional shortages of Plaquenil.

Though I mentioned earlier that most people with chronic illness typically need a few months on Plaquenil to see results, I am happy to report dramatic decreases in my symptoms within three weeks, and thrilled to learn about what-seems-to-be an even faster response occurring in the body when a virus like COVID-19 is concerned.

Plaquenil saved my life.

It allowed me to return to work, school, and be able to perform simple activities of daily living that I once had a nurse help me accomplish on a regular basis. In the midst of the uncertainty we have all felt during these past few weeks, I am hopeful that Hydroxychloroquine, registered on The World Health Organization’s List of Essential Medications, and which cost me approximately $25 for a month’s supply (USD) with a discount card, will be the answer to defeating this pandemic as quickly as it fell upon us.

Main photo credit: Photo by Science in HD on Unsplash

Marisa Zeppieri is an author, speaker, and health journalist living in New York. She is also the founder of LupusChick.com, a nonprofit and social community that helps those living with lupus and autoimmune disease. Her memoir about thriving despite Lupus will debut in 2021 from Broadleaf Books.

Marisa Zeppieri-Caruana

Written by

Journalist | Professional Napper | Former Mrs. NY | Founder, LupusChick.com Nonprofit — www.Marisazeppieri.com

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