Lupus patient: ‘They haven’t even proven it helps’

Lupus treatment in short supply, family discovers as drug is touted as possible treatment for COVID-19.

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April 14, 2020 - 10:06 AM

The Johnson family, from left, Bob Sr., Beverly, Bob Jr. and Melanie. Register file photo

“They haven’t even proven it helps” treat COVID-19, said Melanie Johnson, former Humboldt cheerleading coach and mom of four, in relation to the drug hydroxychloroquine, more commonly known as Plaquenil.

Johnson has been getting treatment for the autoimmune condition lupus for about two years now, and has been taking Plaquenil to help treat symptoms like fatigue and severe joint pain.

If the drug’s name sounds familiar, that’s because it has been at the center of a medical controversy surrounding treatments for COVID-19, more specifically because President Trump has advocated the drug’s use despite little data to prove its effectiveness.

Though it’s too early to know if Plaquenil is a “game changer” in relation to treating COVID-19, the drug has been a proven treatment for lupus since the 1950s, and in Melanie Johnson’s case, has helped to provide significant relief.

For instance, she said that without the drug she notices “hurting more,” particularly in her “hips and ankles.”

However, because health officials are desperate to find a cure for COVID-19, and a number of individuals are even taking the drug without a prescription, Johnson and others are unable to get the treatment doses they’re used to receiving.

The situation is cruelly ironic, Johnson suggested, because when she first heard people discussing Plaquenil as a potential treatment for COVID-19, she thought it was an “awesome” coincidence, because she might not have to worry about contracting the virus.

As of right now, though, Johnson is only able to take about half her regular dose of Plaquenil — since that’s all that’s available — and not only are her lupus symptoms worsening, she and others may soon not have access to the drug at all.

At first she had to “ration it down,” she said, and now the pharmacy has “no clue” when it will get more of it.

“I never would have expected to be in this situation,” Johnson said. “It’s very frustrating.”

Moreover, she has “mixed feelings” because she wants people to be treated for COVID-19, but in turn this means that she will have to be in pain.

That sacrifice wouldn’t be so bad, she suggested, but whereas Plaquenil is known for “treating [lupus] symptoms for a fact,” this has not yet been proven regarding COVID-19.

Plaquenil is the “go-to drug for lupus,” Johnson emphasized, and without it, “I really don’t know what to do.”

“It really does hurt to walk,” she said. 

And “the fatigue is the worst,” since it’s like she’s “never rested.”

HUMBOLDT pharmacist Christy Seufert said that there have been some “small studies” showing that Plaquenil is effective in treating COVID-19, but “nothing big.”

And Iola pharmacist Bill Walden was also reserved, saying “we don’t even know if it works.”

In fact, he added, “it can be an extremely dangerous medicine,” with potential complications in relation to one’s heart and pulmonary system.

Hence at this point, the only safe position regarding the drug’s effectiveness, Seufert suggested, is: “I don’t know.”

As of right now, she said it’s mostly “rumored that it helps,” and this will be the case at least “until there’s full-blown big studies.”

Regardless, “people are using it off-label,” Seufert said, because they’re afraid of getting sick and willing to try almost anything.

“They’re grasping at something,” said Walden, and agreed that unless prescribed by a physician that people should not be indirectly preventing others from getting the medication for conditions like lupus.

Indeed Walden said that people were even “calling to get on a list” at the Iola pharmacy, despite not testing positive for COVID-19, and despite lack of proof the drug works.

Seufert also said that because “huge hospitals” are fighting to keep so many patients alive, “they’re at their wit’s end; they’ll try anything.”

Whereas hospitals “never used it before,” she added, now they’ve “taken everything that was available.”

Thus despite little hard data regarding the drug’s effectiveness, Seufert said that at the Humboldt pharmacy Plaquenil “has been on back-order.”

The situation is essentially the same at Iola Pharmacy, according to Walden.

Pharmaceutical companies just “couldn’t keep up with the demand,” Seufert said.

Hence for those in the area who regularly take Plaquenil for lupus or arthritis, they were only able to get their prescription filled “one last time.”

“I’m sure everyone’s got orders in for it right now,” Seufert said.

But when it will be available again, is anyone’s guess.

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