Existing Drugs May Be Capable of Helping COVID Long-Haulers Recover

Miranda Erlanson, 28, was a healthy and energetic middle school teacher, volleyball coach, wife, and stepmom to three before she contracted COVID-19 in March of 2020.

Because she had not recently traveled outside of the country, Erlanson did not qualify for a COVID-19 test at the time. An ER physician originally treated Erlanson for bronchitis, but her condition did not improve with inhalers and rest.

“I became sicker and sicker,” she tells Verywell. “I began mixing up some of my words, and I was getting hot flashes. Then I started getting soreness in my ligaments, which at first I thought was from an old volleyball injury. After that, I started getting nauseous.”

Erlanson’s COVID-19 illness never progressed to the point that she had to be in the intensive care unit or on a ventilator, but she did have to be hospitalized three different times. However, despite having no risk factors for becoming severely ill from it, her condition turned into a long COVID infection from which she still has not recovered.

What Is Long COVID?

According to the Centers for Disease Control and Prevention (CDC), long COVID involves a whole host of symptoms that can last weeks or months after an initial COVID-19 infection, whether the infection was mild or severe.

Symptoms vary significantly from person to person, and may include:

• Tiredness or fatigue
• Difficulty thinking or concentrating ("brain fog")
• Headache
• Loss of smell or taste
• Dizziness on standing
• Fast-beating or pounding heart (also known as heart palpitations)
• Chest pain
• Difficulty breathing or shortness of breath
• Cough
• Joint or muscle pain
• Depression or anxiety
• Fever
• Symptoms that get worse after physical or mental activities

Prolonged symptoms occur because of abnormal response from the immune system, explains Bruce Patterson, MD, a leading virologist, researcher in long-haul COVID-19 infections, and CEO of IncellDx, a cutting-edge medical diagnostics company.

“In our research, we did something called immunologic profiling and found that people with long COVID had a completely different immune condition from their primary COVID, which explained why they were feeling the way they did,” Patterson tells Verywell. He adds that being validated helps many of these patients, often referred to as "long-haulers," in their recovery journey. “We’re still battling to get people to recognize that this really is something.”

The immune system of a long-hauler keeps behaving as if it is battling the SARS-CoV-2 virus even long after the virus has cleared the body. The immune system then continues to produce substances called cytokines, which are beneficial in fighting an active infection, but cause widespread inflammation and damage to the body if left unchecked.

“It looks like they have a persistent viral inflammation. These proteins (cytokines) that remain in cells that are mobile, and these mobile cells go all over the body and cause inflammation," Patterson says. "That’s why the symptoms are so diverse."

The Impact of Long COVID

“It is gut-wrenching when I hear these stories of very vibrant, productive people who are on the spectrum from can’t-get-off-the-sofa to bedridden,” Patterson says. “The fatigue is overwhelming for the majority of them. Their exercise intolerance affects their mental health status. They can’t do what they normally do. It’s like having the flu for 12 to 15 months, but without a fever.”

Erlanson says she has a new symptom every week. Her complications included collapsed lungs, difficulty standing up, trouble concentrating, low-grade fevers every night, and vomiting up to 20 times a day. She became wheelchair-dependent due to the inability to feel her legs and relies upon oxygen to help her breathe comfortably.

“My illness has been a grief process because we are grieving the loss of the person I used to be,” she says. “We used to be active members of the community. I ran a half marathon a few days before I got sick.”

Finding Hope Through New Research

In February 2021, Erlanson participated in a webinar with Patterson and his collaborators Purvi Parikh, MD, and Ram Yogendra, MD, MPH, the founders of the Chronic COVID Treatment Center. Erlanson learned about two novel algorithms developed by IncellDx and COVID Long Haulers that examine changes to the immune system after a COVID infection and can predict the severity of long COVID.

The first algorithm developed by Patterson and his associates predicts how serious COVID is likely to be based upon the severity of the disease during the initial, active phase of infection.

The second algorithm, involving a test known as the IncellKINE, examines the differences in cytokine responses between people with active cases of COVID-19 and long COVID patients. Using a blood test to measure immune markers and cytokines, researchers gain greater insight into the immune responses of long COVID patients. They can also definitively determine who has long COVID.

“We needed a non-subjective way to determine if people were getting better immunologically,” Patterson says. “Our testing is a series of 14 biomarkers that we discovered during active COVID [infection] that are important in the pathogenesis for the virus. We fed that into a computer, and the computer told us what was unique about long-haulers and what you need to direct your therapies at.”

Patterson and his partners are using telehealth to regularly meet with over 4,500 long COVID participants in their program. They collaborate with patients’ primary care providers, making recommendations for care based upon each individual’s unique immune profile.

“We’ve identified this immune signature that we’ve discovered can direct treatment with drugs that are currently available on the market. We direct therapy to the cause,” Patterson says. “We have a network of over 100 primary care providers that we have to acknowledge. Their cooperation has really led our chronic COVID treatment center to be the leaders in the field right now.”

Based upon each patient’s immune profile, Patterson says there are three types of medication he and his fellow physicians have found to be beneficial in treating long-haul COVID symptoms:

• Glucocorticoid steroids: Different from anabolic steroids, which are male hormones that increase muscle mass, glucocorticoids halt the inflammatory process. The most common oral glucocorticoid is prednisone.
• Statins: A class of cholesterol-lowering medication, statins have recently been shown to protect the linings are blood vessels against inflammation. Some examples include simvastatin (Zocor), atorvastatin (Lipitor), pravastatin (originally marketed as Pravachol), and rosuvastatin (Crestor).
• CCR5 inhibitors: Originally designed to treat human immunodeficiency virus (HIV), researchers believe CCR5 inhibitors may block the inflammatory response in long COVID.

A New Drug Shows Promise

Erlanson enrolled in a double-blind clinical trial of a drug called leronlimab, an experimental CCR5 inhibitor designed specifically for long COVID. Erlanson did not know whether she received the drug or a placebo until the study was unblinded, at which time she received confirmation that she did receive the drug. But she says that noticed a marked improvement in her condition about three days after she received her first dose on March 16.

“I was able to eliminate more than 24 symptoms,” Erlanson recalls. “I could think without it causing a headache. My lower body was not numb. This treatment got me out of my wheelchair, fixed the partial myoclonic jerks that I was having, and it fixed my nausea. I was able to cook, and my husband and kids were able to have a normal mom.”

CytoDyn, the company that manufactures leronlimab, said in a press release that their Phase 2 clinical trial showed a significant improvement in 18 of 24 long COVID symptoms studied in the non-placebo group. CytoDyn is working with the FDA to receive approval to proceed with a Phase 3 trial in the US. In the meantime, CytoDyn is conducting two Phase 3 trials of leronlimab in Brazil.

Erlanson has not received any doses of her trial medication since the first week of May, and since then, her symptoms have progressively returned. “I had forgotten how bad it was, and how much everything hurt. This drug is a shining light,” she says.

Recovery Is Possible

Patterson stresses that even though the relative mortality of COVID-19 may seem low, the potential short-term and long-term effects can still be devastating.

“I don’t think anyone wants to see their family members on a ventilator," he says. "[COVID deaths] are not pleasant deaths. Your oxygen is so low that you probably feel like you’re drowning. I think once you see that, you understand that even [though] the risk of dying is 1%, you should do everything you can to avoid that situation.”

For those who survive COVID-19 but develop long COVID, the recovery is extensive.

“Over 80% of our patients get back to 90% or more of their pre-COVID levels. The caveat is that they are going to have some level of effects from being debilitated or sedentary for months on end,” Patterson says. “They will still need to get back in physical shape and get rid of 'normal' aches and pains when their immune system has returned to normal.”

Patterson predicts that the consequences of long COVID will place a huge burden on the healthcare system.

“Ten to 30% of COVID infections will turn into long COVID," he says. "Over the next three to five years, I think long COVID may be just as bad as acute infections in terms of cost to these individuals and cost to the economy because they can’t work.”

Support for Patients and Caregivers

Erlanson founded COVID Survivors from Texas, Inc., a 501(c)3 non-profit support group and resource for the Texas community. Its private Facebook group has over 4,000 members.

“I started the COVID Survivors from Texas Facebook Support group in September 2020 when I realized that my issues weren’t going anywhere, and so I started learning on other support groups," she says. "The leaders [of those support groups] were are all women, so it inspired me to start a group for Texas. My goal is to bring COVID long-haulers into a safe space where they can discuss their symptoms. I don’t want them to have a single day where they have to suffer without an answer.”

Erlanson has sold t-shirts to raise funds for those who have lost their income to pay for medications and treatments. She's also built out a network of physicians who are compassionate towards long-haulers.

A recent survey of long COVID patients and their caregivers found that caring for loved ones with long COVID also takes a tremendous toll on their support system.

“A lot of caregivers have taken over all of the household chores,” Erlanson says. She suggests that friends and extended family bring meals or provide respite so the primary caregiver can leave the house for a short time. “Anything that lets caregivers take a break and focus on themselves. It’s also important to join a support group for long-haulers and their caregivers."

Above all, long-haulers and their families will need long-term support from society at large.

“The healthcare system is taxed right now. The most important thing we can do is get leaders to act to get long-haulers access to therapeutics," Erlanson says. "Some of us have participated in trials, and we found something that helped us, but then we were forced to go off. Every day that long-haulers don’t get access to therapeutics, there’s more damage. It’s a heavy toll on us, our families, and our kids.”

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.