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Hydroxychloroquine and the closely related drug chloroquine are anti-malaria medications commonly prescribed to treat lupus. Both medications are being investigated in clinical trials as potential treatments to prevent infection with the new coronavirus, also known as SARS-CoV-2, and to treat active cases of COVID-19.
As interest in the drugs for use in treating COVID-19 has increased, some people who rely on hydroxychloroquine or chloroquine to treat systemic lupus erythematosus (SLE) have had trouble obtaining their prescriptions. More than 45,000 members of MyLupusTeam report using hydroxychloroquine, sold under the brand name Plaquenil, to treat their lupus. More than 900 members report using chloroquine, sold under the brand name Aralen.
So far, this problem is limited to hydroxychloroquine and chloroquine. No supply problems for other medications commonly prescribed for lupus have been reported.
Boston rheumatologist Dr. Jeffrey Sparks is an assistant physician at Brigham and Women’s Hospital and an associate professor at Harvard Medical School. In an interview with MyLupusTeam on April 6, Dr. Sparks said, “I've definitely had patients that have had difficulty obtaining the drug. We think it is a big problem on the national stage.”
Depending on where they live, people with lupus are experiencing different types of difficulties in obtaining hydroxychloroquine. Where the drug is available, there are sometimes new restrictions on how much can be dispensed at one time. Dr. Sparks explained, “Certainly there are states where there are restrictions on the number of pills and refills you can get. In the past, we would write a prescription for a 90-day supply. In some cases now, patients can only get a 14-day supply.”
In other cases, pharmacies are now adding steps to check what condition the medication was prescribed to treat. “I've had pharmacies that wanted a letter on my letterhead, signed by me, stating that the prescription was for lupus,” said Dr. Sparks.
According to the Arthritis Foundation, states including Idaho, Nevada, Ohio, and Texas are among those that have put restrictions in place to limit the amount of medication dispensed and verify what diagnosis the prescription is for.
In a March 27 interview, MyLupusTeam asked Dr. Siddharth Tambar of Chicago Arthritis and Regenerative Medicine about shortages in the supply of hydroxychloroquine for people with lupus. He said, “What I'm starting to hear from patients, what I'm hearing from pharmacies, is that there is some limitation in supply.”
Dr. Tambar described similar problems in receiving partial prescriptions — 20 or 30 days rather than 90. However, in some cases, the pharmacy simply doesn’t have any hydroxychloroquine in stock. “Patients are being told, ‘We just don't have the medication on hand. You're going to have to wait,’” he said.
Dr. Sparks described how some of his patients have filled their prescriptions at a pharmacy in another state — where hydroxychloroquine was still readily available — then had relatives pick up the medication and mail it to them.
As sources and supplies of hydroxychloroquine fluctuate, it is worth noting that some people who take the medication experience differences in side effects, such as stomach upset, depending on whether they take name-brand Plaquenil or generic hydroxychloroquine. Let your doctor know if you experience new or different side effects associated with your medication — the supplier may have changed.
Some people who take hydroxychloroquine and chloroquine to treat their lupus are beginning to wonder whether they should ration their medications to make their prescriptions last longer.
“These are decisions that you shouldn't make by yourself,” cautioned Dr. Sparks. “You should really reach out to your rheumatologist.”
“It's hard for me to advocate for reducing dosage to make supplies last, particularly right now,” he continued. “The shortages have not seemed to be severe enough that we're depriving patients of treatment.”
“If this is a huge problem and people are really grappling with trying to ration their own supply, we as rheumatologists need to hear about it,” he said. “Because if we don't hear about it, then we can't really advocate for you.”
Some people who take hydroxychloroquine or chloroquine for lupus are concerned about what will happen if they run out of their medication and are forced to stop taking it.
According to Johns Hopkins Lupus Center, those who stop taking an anti-malarial drug abruptly may raise their risk for a lupus flare. However, in one small study, withdrawing hydroxychloroquine did not raise the risk for a moderate or severe lupus flare in older people with stable disease. An individual’s risk for a lupus flare depends on many factors, and your doctor can help you understand yours.
Before you stop taking any medication, always talk to your doctor for guidance on whether it may be safer to taper off your dosage, and if so, how best to taper it. You may also ask your doctor whether it’s a good idea to start a replacement medication before you discontinue the one you were taking.
“A lot of organizations are really working their hardest to both increase the drug supply and to make sure that patients with rheumatic disease are appropriately prioritized,” said Dr. Sparks.
In fact, several manufacturers of hydroxychloroquine and chloroquine have increased production of the drugs, as well as donating tens of millions of doses. The Department of Health and Human Services will release donated medications in response to requests from hospitals, doctors, and organizations.
State governments, retail pharmacies, and the U.S. Food and Drug Administration (FDA) are all involved in taking actions to help to protect supplies of these medications for people with lupus and other autoimmune conditions.
Your doctor may be able to help you more easily access your medication, but only if you tell them there’s a problem.
“If you're having difficulty getting your medication refilled, even if you do end up getting it, it’s helpful for rheumatologists to know what patients are going through,” explained Dr. Sparks. “If we don't notice a problem, we can't try to fix it. I've been able to actually talk to the American College of Rheumatology and a lot of the other organizations to try to advocate for patients.”
MyLupusTeam members report varying experiences. Here are a few conversations and question-and-answer threads about hydroxychloroquine:
Have you had trouble filling your lupus prescriptions? Which of your medications have been affected? Please share your experiences in the comments section below.