Patients with autoimmune diseases in suburbs struggle to find hydroxychloroquine

Kim Stines knew she and her daughter could be in trouble when she found out the medicine they take to manage their autoimmune diseases was being touted as a possible coronavirus wonderdrug.

Stines, of St. Charles, started reducing her doses of hydroxychloroquine a few weeks ago so her daughter, 21-year-old Corrin Stines, has enough.

“What's the worst thing that can happen if I reduce this dose or stop taking it?” Stines said she asked her doctor. “Because I'm more worried about her than me at this point.”

As hydroxychloroquine has been touted as a possible treatment for COVID-19, patients with autoimmune diseases such as lupus and rheumatoid arthritis have struggled to fill the prescriptions they rely on to keep their condition manageable. The Food and Drug Administration reported March 31 there is a shortage of the drug.

A French study of 36 COVID-19 patients last month found those given HCQ and an antibiotic saw a reduction in their viral load — results President Donald Trump has highlighted. Other studies have found mixed results for HCQ's ability to treat or prevent COVID-19, and a larger French study this week found the drug didn't have a significant effect on the disease.

Dr. Rosalind Ramsey-Goldman, a professor of rheumatology at Northwestern, says hydroxychloroquine is an essential medicine for lupus patients.

Sold under the brand name Plaquenil, HCQ helps treat symptoms such as fatigue and joint pain, lessen flares and prevent organ damage. And HCQ has fewer side effects than other drugs lupus patients take, Ramsey-Goldman said.

When Corrin Stines was diagnosed with lupus and rheumatoid arthritis at age 12, she needed chemotherapy and high doses of intravenous steroids to “reset” her immune system.

“I lost a lot of my hair,” she said. “I also had to live in a bubble, and I got sick all the time because my immune system was completely wiped out.”

She said HCQ has allowed her to treat her autoimmune conditions without severe side effects. The Elmhurst College senior, who's planning to study clinical psychology and neuropsychology at Southern Illinois University-Edwardsville, said she's able to live “a seminormal life.” She's afraid that could change without HCQ.

HCQ is the only drug that's been shown to improve survival in lupus patients, Ramsey-Goldman said. It works by inhibiting the creation of antibodies that attack a patient's own cells.

She stressed there's no proof HCQ can combat the coronavirus. The FDA has approved its use for some severely ill patients, and clinical trials are underway.

She said no one should take HCQ for the coronavirus unless they are in a hospital or clinical trial.

Although HCQ has fewer side effects than other lupus medications, it does have side effects, including increased risk of dangerous heart rhythms.

In Naperville, 70-year-old Dianne Gerlach is worried about her next refill of HCQ, which she's used to treat lupus for three decades.

Gerlach's pharmacist scoured other stores to find enough pills for her but could come up with only half her 90-day supply. The pharmacist said to call when Gerlach has a month's worth left. That will be next week.

“I guess I'm trusting my pharmacist and I'm trusting God that they will find me some,” she said.

A CVS spokesman said its pharmacies are limiting HCQ supplies to 10 days for COVID-19 patients. A Walgreens corporate spokesperson said it issued guidelines to its pharmacies to set a 14-day supply limit for new HCQ prescriptions and a 30-day supply limit for active prescriptions and patients with a history of use.

Ramsey-Goldman said lupus patients looking for HCQ may want to try supercenters like Walmart and Costco, reputable mail-order pharmacies and compounding pharmacies, which create drugs for specific patients' needs. Nonprofits like the Lupus Society of Illinois may also know where to find HCQ, she said. Stopping the medication for just two weeks could cause a flare, she said.

Kim Stines said she may have to start taking her full dose of HCQ again. She is feeling the effects of her autoimmune diseases, including one that causes painful crystals to form in her joints.

She hopes HCQ has a powerful effect on COVID-19, but she says it already has been a wonderdrug for autoimmune patients who rely on it.

“I would love nothing more than for this to be a game-changer” for COVID-19, Stines said. “But to say that with no clinical proof and not take into consideration the fallout for patients whose lives depend on this drug is very unsettling and leaves parents and patients feeling very vulnerable.”

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Dianne Gerlach was diagnosed with lupus more than 30 years ago and has been taking hydroxychloroquine for most of that time. She's pictured here with her husband, Ken. Courtesy of Dianne Gerlach
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