Tinker Ready

December 04, 2024

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Charlie McCone, a San Francisco marketing specialist, developed long COVID in 2020, recovered and developed it again in 2021. He’s been sick with fatigue and shortness of breath since then, spending many hours of every day in bed.

Only one drug helped his shortness of breath, he said. But doctor after doctor refused to prescribe that drug, Plavix, approved by the US Food and Drug Administration (FDA) to prevent blood clots. McCone began asking for it after doing his own research and learning it showed promise. When he finally found a doctor to authorize a prescription, McCone said, he began to breathe easier again.

McCone, now an advocate for long COVID sufferers as part of the Patient-Led Research Collaborative, a group of researchers and patients with long COVID, felt he had to take alternative steps. With no federally approved treatments for the millions of Americans who have experienced long COVID, some patients and doctors are turning to off-label drugs to manage the condition.

But patients say it is not always easy to get a doctor to prescribe them. And in some cases, insurance will not cover the drugs, ruling them experimental.

In the case of Plavix, Stellenbosch University researchers in South Africa have published results of a blood plasma analysis that found patients with long COVID had microclots — and Plavix may help relieve them.

McCone and others are asking doctors to learn about and use off-label drugs that show evidence of helping long COVID symptoms. Among them:

• Low-dose naltrexone for fatigue
• Nicotine patches for fatigue
• Rapamycin for immune function
• Triptans for headaches
• Beta-blockers for postural orthostatic tachycardia syndrome, dizziness
• Paxlovid for viral persistence
• Plavix and other blood thinners for blood clots

“We don’t believe any of these drugs are going to cure patients, but [using them off-label] can be the difference between a patient holding onto their job,” McCone said. “There could be a patient going from being stuck in a dark room to being able to socialize and enjoy their day. This can be difference of a parent being able to take care of their children.”

Not every doctor is going to be comfortable prescribing Plavix, McCone said. But there is some solid evidence to support the idea that low-risk drugs like it can bring long COVID patients a lot of relief, he said.

The Argument for More Aggressive Off-Label Prescribing

Julia Moore Vogel, PhD, senior program director at the Scripps Research in La Jolla, California, was co-author on a paper published last month in Cell calling for a stronger push for long COVID treatments. The paper noted that “as patients await evidence-based care, many engage in self-experimentation on the edges of medical science.”

Moore Vogel and others say people don’t need to experiment. They can use safe, existing treatments if they know about them and a doctor agrees a prescription is warranted. She would like to see more professional medical groups do more continuing education on long COVID so doctors can learn about the best off-label options.

Groups like the American Academy of Physical Medicine and Rehabilitation have come up with a guideline on how to treat cardiac, respiratory, and other symptoms in patients with long COVID. But Moore Vogel thinks primary care doctors should take the lead.

“Part of what we’re saying is a lot of it falls on the primary care physicians at this point because people are waiting so long to get into those subspecialties,” she said.

She would like to see recommendations for the primary care providers boiled down in simple terms about what is known about first-line, off-label therapies that have emerged.

Sterling Ransone, MD, a family physician in coastal Virginia, agrees that primary care specialists need to be educated on how to detect and treat long COVID.

He says he sees about one long COVID case a week, and sometimes his patients don’t know they have it. Patients will come in a month after symptoms, and he will ask them if they were sick and have tested for COVID.

“I literally had a patient tell me, ‘Is that still a thing?’” he said.

He suggests doctors add long COVID to the list of conditions they rule out when presented with confounding symptoms.

“What we need to do is make sure we always ask about the potential for long COVID with this myriad of symptoms,” Ransone said.

He prescribes off-label medication after doing research, if a patient asks for it, he said.

“If it’s somebody I know well and they’ve got questions about something, I’ll absolutely sit down and talk with them and tell them the research that I’ve done,” he said. “I mean, you know, from a physician standpoint, above all, do no harm, right?”

Once patients and doctors decide to try something, they need to get insurance approval. Some of the medicines are denied insurance coverage and are expensive, Ransone said.

“We have to go through prior authorization processes, and that’s just another hurdle these folks unfortunately have to jump over,” he said.

One reason patient advocates say off-label medications are key is that clinical trials take too long, McCone said. Many trials of long COVID treatments are underway, but none have led to conclusive findings that have identified effective standardized treatments for the condition. As a result, the FDA has not approved any standard long COVID treatments in the same way treatments for other viral conditions and diseases have received approval and are widely used.

Patient Advocacy by Patients

McCone is a patient representative to the National Institutes of Health’s RECOVER-TLC research program, which met this summer to launch a series of clinical trials. He said the organization is making progress, but results from the clinical trials aren’t expected until 2028 — a long time for patients with long COVID to wait.

He noted the upcoming trial of low-dose rapamycin, which researchers hope will address some of the immune or infection-related dysfunction that drives long COVID.

After McCone spent hours in bed for more than a year, he can now work at the computer for about 2 hours a day. His shortness of breath improved after he started taking Plavix.

“That’s up from about 30 minutes. I can leave the house occasionally, once to twice a week, depending on the week,” he said.

McCone and others are calling for better continuing education for doctors about long COVID for doctors and more publicly available information to help patients know what drugs are already out there and might benefit them.

“Read the research, provide some low-risk treatment options to your patients, and let your patient decide,” he advised doctors. “I don’t think this is asking you too much. This is a health crisis that’s impacting every aspect of society.”

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