As hydroxychloroquine (Plaquenil) is being touted as treatment for COVID-19 without the necessary randomized clinical trials and adequate data to know if this is true, lupus, rheumatoid arthritis (RA), and other rheumatology patients are worried that there could be hydroxychloroquine shortages that could have a serious, or even life-threatening, impact on their diseases. The Global Healthy Living Foundation/CreakyJoints talked to a lupus specialist and multiple patients for their perspective.
To ensure that people with lupus, RA, and other chronic conditions continue to have access to hydroxychloroquine, sign up to be a 50-State Network patient advocate.
When Kim Berkowitz, 45, was diagnosed with rheumatoid arthritis almost 14 years ago, it took a couple of years of medication trial and errors to find one that worked for her with minimal side effects. That drug was hydroxychloroquine, which was first used as a malaria treatment, but is now more commonly prescribed for autoimmune inflammatory diseases like lupus and RA.
She’s been on the medication for nearly 12 years.
“I’ve had a few disease flares over that time, but it mostly keeps me in check,” says Berkowitz, who lives in Long Island, New York.
For Shanay Watson-Whittaker, 42, who lives near Detroit, Michigan and was diagnosed in 2010 with lupus (as well as Raynaud’s disease and Sjögren’s syndrome), “hydroxychloroquine helps prevent my flares and has allowed me to work and be a mother to my six children.” Watson-Whitaker’s husband has sarcoidosis (another autoimmune disease) and “we both have to keep going,” she says. “Hydroxychloroquine has helped me maintain some semblance of my everyday life. With everything in the news about it being used for COVID-19, I’m scared I won’t have the medication I need to keep going.”
“Hydroxychloroquine is a first-line drug that most lupus patients will be prescribed,” says Ashira Blazer, MD, a rheumatologist at NYU Langone Health in New York City whose clinical research focuses on lupus. “It’s the number-one mainstay of lupus therapy. As long as patients do not have an allergy or an intolerable side effect, we want patients to take it.”
In other words, hydroxychloroquine is a critical medication for the 1.5 million Americans living with lupus, according to the Lupus Foundation of America. About 90 percent of lupus patients are women.
Lupus is an autoimmune disease that can affect nearly every organ and system in the body. Some cases can be mild; serious cases — which can cause kidney damage, heart disease, and other complications — can be life-threatening. Hydroxychloroquine helps prevent such serious complications in people with lupus.
“Lupus is a relapsing-remitting disease. You have flares of active disease and then go into periods of remission, but you still have lupus even when you don’t have active symptoms. Patients who take hydroxychloroquine are less likely to have flares of their disease than people with lupus who do not use it,” says Dr. Blazer. “The more often patients have lupus flare-ups, the more they risk having serious injuries to internal organs, such as the heart, kidney, and lungs.”
“In lupus, a very common complication is premature cardiovascular disease,” Dr. Blazer adds. “Taking hydroxychloroquine makes people much less likely to have heart disease comorbidities.”
When someone is diagnosed with lupus, they should start taking hydroxychloroquine as soon as possible, Dr. Blazer says. “Lupus patients on hydroxychloroquine are more likely to experience a normal life than patients not taking it.”
In rheumatoid arthritis, hydroxychloroquine is a good option for many patients who can’t afford or tolerate biologic medications, Dr. Blazer says. It is typically used in combination with two other medications, methotrexate and sulfasalazine, a treatment that is known as triple therapy. Together, these three medications can do a good job controlling rheumatoid arthritis.
You may be hearing all of these names used in media coverage right now. A quick primer: Chloroquine and hydroxychloroquine are very similar medications with a small difference in molecular structure.
“Chloroquine and hydroxychloroquine are very closely related, but hydroxychloroquine is a less toxic version,” says Dr. Blazer. “Some potential though rare side effects, such as night terrors and Long QT syndrome [a potentially life-threatening heart rhythm disorder] are less common with hydroxychloroquine than with chloroquine.”
She notes that rheumatologists tend to prescribe hydroxychloroquine much more often than chloroquine, “though you might prescribe chloroquine in some cases.” For example, it can be more potent for severe skin issues and other lupus symptoms.
Plaquenil is the brand-name version of hydroxychloroquine. It is like saying Tylenol instead of acetaminophen.
Hydroxychloroquine (Plaquenil) is an oral pill that is usually given to lupus and RA patients in 200 milligram dosages, often twice a day.
Importantly, “we call it an immunomodulating drug, not an immune-suppressing drug,” says Dr. Blazer. “It doesn’t suppress the immune system; it just allows it to behave in a more functional way. There is no increased risk of opportunistic infections the way there can be with other disease-modifying drugs used to treat lupus or rheumatoid arthritis.”
We asked Dr. Blazer for a basic cell biology lesson on how hydroxychloroquine actually works to treat conditions like lupus and RA. Here’s what she said:
Each cell has mechanisms to respond to something foreign that it encounters, whether that’s a virus (like COVID-19) or parts of your own immune system (as is the case in autoimmune diseases like lupus and RA).
Foreign particles are ingested into the cell into a compartment called an endosome, which is like a little bubble inside the cell. Endosomes have receptors (called toll-like receptors) that need to be activated to help them do their job. They require an acidic environment to work.
Hydroxychloroquine neutralizes the pH and makes the endosome less acidic so these toll-like receptors cannot be activated. This makes the cell less responsive to the foreign body, whether that’s a virus or parts of your own immune system.
Because these toll-like receptors are located all over your body, a medication like hydroxychloroquine can help decrease systemic (or “body-wide”) inflammation due to lupus or RA.
As for a potential treatment for COVID-19, hydroxychloroquine is thought to work in a similar matter. When a virus gets into a cell, it has to replicate. The virus gets ingested into endosomes as well. By tamping down the function of the endosome, hydroxychloroquine is thought to affect the virus’s ability to replicate, which could decrease viral reproduction. But this needs to be better studied in COVID-19 specifically.
“The data in humans is pretty scarce,” says Dr. Blazer. “There are not yet solid randomized controlled trials. Some early research may be promising, but this is a long way away from being a standard treatment.”
Right now, Dr. Blazer says, hydroxychloroquine is being used in some hospitalized patients across America — especially in those who are critically ill — because some early data from Chinese and French researchers suggests it is effective.
Hospital systems may need to buy up supplies of hydroxychloroquine as part of treatment protocols currently being developed. This will mean pharmaceutical companies who manufacture these medications will need to increase production in order to maintain adequate supply.
Shortages are starting to be reported anecdotally by patients, according to reporting by ProPublica and other outlets. Members of our Global Healthy Living Foundation patient community have been reporting similar circumstances.
Kim Berkowitz normally gets a 60-day supply of hydroxychloroquine; last week she realized she had just 15 days left, so she went to go about getting a refill. She goes to a local family-run pharmacy she’s been using for years. They know her by name. When she called last week to refill her prescription, the pharmacist told her point-blank, “Kim, I can’t get it in.”
“I’ve been on this drug for so long — how could they not be able to give it to me now?” She started to feel panicked. She called her rheumatologist, who was able to call around and find another pharmacy that could fill the prescription.
“I don’t know what will happen if I stop taking it,” Kim says. “Am I going to have to stop cold turkey because of this?”
“If a patient has to stop taking hydroxychloroquine, they are more likely to experience a flare,” says Dr. Blazer. “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.”
Some doctors we’ve spoken with recently have reported patients — who do not need hydroxychloroquine to manage a chronic inflammatory condition — asking about “just in case” prescriptions should they get COVID-19.
This is an all-around bad idea. Do not request this from your doctor if you do not currently take hydroxychloroquine for a condition like lupus or RA.
For one thing, there are many unanswered questions about how hydroxychloroquine should be used in COVID-19. Doctors still need to understand when in the course of disease to administer the medication, what dosage to use, and more.
“I understand why people are asking about [getting their own hydroxychloroquine prescription] but we really need to get data on the use of this therapy in COVID-19 and use these resources judiciously,” says Dr. Blazer.
Plus: “Any medication that is strong enough to have an effect is also strong enough to have a side effect, says Dr. Blazer. “In rare cases H can cause long QT syndrome, which can be deadly. There’s no set dose for COVID-19 yet. Patients who attempt to stockpile this and take it at home have no idea what dose to take. They may not be considering their weight or other health conditions and could be putting their own health at risk. You can overdose if you take too much. This is not something to take on your own without the supervision of a physician.”
Dr. Blazer says patients should be in contact with their physician over the phone or using a telehealth system to come up with a plan to source their medication.
Very importantly, “do not ration your current supply,” she says emphatically. “This is not the kind of drug you can ration — you need a steady-state dose in order for it to be effective. Don’t take matters into your own hands.”
The Global Healthy Living Foundation will be working with other advocacy groups and stakeholders to make sure these medications are available for rheumatology patients who need them. To ensure that people with lupus, RA, and other chronic conditions continue to have access to hydroxychloroquine, sign up to be a 50-State Network patient advocate.
You can also report any drug shortages you are experiencing to the Food and Drug Administration.
Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.