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The National Institutes of Health (NIH) is intensively studying long COVID, a condition where individuals continue to experience symptoms for three months or more after contracting the virus. These symptoms can vary widely, from fatigue and brain fog to dizziness, and can impact almost every part of the body, lingering for months or even years.  

To better understand long COVID, NIH launched the Researching COVID to Enhance Recovery (RECOVER) project, supported by a robust $1.5 billion fund. This initiative, spotlighted in a study published in JAMA, is at the forefront of a nationwide effort to better comprehend, treat, and ultimately prevent the enduring effects of COVID-19 on patients. 

“Americans living with long COVID want to understand what is happening with their bodies,” said ADM Rachel L. Levine, MD, Assistant Secretary for Health, in a NIH press release. “RECOVER, as part of a broader government response, in collaboration with academia, industry, public health institutions, advocacy organizations and patients, is making great strides toward improving our understanding of long COVID and its associated conditions.” 

About the Study  

Scientists studied health details of 9,764 adults to examine why some people were able to shake off COVID symptoms relatively quickly while others experienced them for a prolonged time . Of these, 8,646 had caught COVID-19, and 1,118 hadn’t. From their study, they noticed that some people who had been sick with COVID-19 still felt unwell a long time after.  

These feelings weren’t just a simple cold – they were things like: 

• Post-exertional malaise 
• Fatigue 
• Brain fog 
• Dizziness 
• Gastrointestinal symptoms 
• Heart palpitations 
• Issues with sexual desire or capacity 
• Loss of smell or taste 
• Thirst 
• Chronic cough 
• Chest pain 
• Abnormal movements 

Researchers made a list of the 12 main symptoms and created a point system. So, if you had many of these symptoms, your score would be higher. Using these scores, they figured out which patients likely had long COVID.  

What’s more, they noticed that some of these symptoms often appeared together. They grouped these into four categories, or “clusters,” to help doctors understand and possibly treat them better. 

Exploring Long COVID Treatment

These studies, along with the analysis of millions of electronic health records to study how COVID-19 affects various organs, are also paving the way for new treatment-centered trials to take place. 

The new treatment trials are divided four “platform protocols” that focus on different aspects of long COVID. A range of treatments are being tests, including drugs, biologics, medical devices, and therapies. Treatments are tested simultaneously in order to more quickly study effectiveness.  

RECOVER-VITAL tests the ability for different medications to fight the persistence of the SARS-Cov-2 virus. In particular, an extended course of Paxlovid, an antiviral currently used to treat new infections, is being tested in this protocol. 

In addition to RECOVER-VITAL, the NIH is also launching platform protocols RECOVER-NEURO, RECOVER-SLEEP, and RECOVER-AUTONOMOUS in order to test treatments to cognitive, sleep, and autonomous nervous system impairments. A fifth platform protocol focusing on treatments to fatigue and exercise intolerance is also being developed, with additional trials being announced on a rolling basis.  

What This Means for You

These trials mark the largest study of long COVID in the world and could prove valuable for the millions of Americans experiencing long COVID symptoms. “I’m excited that as we go into the fall, where typically we can expect a COVID surge, that this is now being researched,” says Zoe Rothblatt, Associate Director, Community Outreach at the Global Healthy Living Foundation, in a recent episode of  The Health Advocates podcast.  

“It’s something we hear a lot about from our community — concern about long COVID. And sometimes we hear those suffering from long COVID be ignored,” observes Steven Newmark, Chief Legal Officer and Director of Policy at GHLF.  

As research progresses, the new RECOVER treatment trials will become a valuable source of research for patients battling this relatively new condition.  

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Just when you thought you nailed down the latest type of vaccine — bivalent vaccines — the script is shifting in the effort to prevent COVID-19 infections. 

A panel of advisors for the U.S. Food and Drug Administration (FDA) recently voted unanimously to update the COVID-19 vaccine to target Omicron emerging subvariants. In particular, the new vaccine will target the subvariant XBB.1.5, which currently makes up about 40 percent of new infections in the United States.  

This new vaccine would be a monovalent vaccine (targeting one strain), rather than the currently available bivalent vaccine, which targets both the original strain of the virus and the Omicron subvariants that took over last winter.  

The reasoning: There doesn’t appear to be a particular advantage to the bivalent vaccines now that the original strain is no longer circulating.  

“It makes sense to re-formulate the vaccine to no longer include the ancestral strain,” says Amesh A. Adalja, MD, a Senior Scholar at Johns Hopkins Center for Health Security. “Some of us advocated that they do this with the prior Omicron bivalent booster as well. It’s unclear that there’s any benefit at all by including a strain that is basically extinct.” 

What’s more, including that ancestral strain may negatively affect how the vaccine works in your body. “There is also some evidence that by including the ancestral strain, antibodies against the newer strains may not form as the immune system primarily reacts to the older strain that it has seen before,” says Dr. Adalja.  

FDA scientists said vaccine manufacturer data show that an updated monovalent formulation targeting XBB subvariants elicits stronger neutralizing antibody responses against those strains than current bivalent vaccines, reports NPR.  

In the alphabet soup of COVID-19 variants, XBB.1.5 is currently considered the most transmissible strain so far, per Yale Medicine. That means it’s more efficient and contagious than predecessors, which tends to be the case as variants mutate.  

XBB.1.5 was first identified in New York in October 2022 and is nicknamed “Kraken,” after a mythical, giant sea monster. There’s currently no evidence that it causes more severe disease than other Omicron strains.  

While making this shift ahead of the fall season was a unanimous decision by the committee members, there was debate over whether the COVID-19 vaccine should be treated like the flu vaccine (which is reformulated each year in anticipation of the flu season). 

Although many people already understand the flu shot’s schedule, experts like Dr. Adalja point out the need for more data before a parallel is drawn between the two.  

“I think it is premature to determine what the optimal schedule of boosting or updating may be,” says Dr. Adalja. “While people like to draw comparisons with influenza, coronaviruses are a completely distinct, viral family with different characteristics. It is also unclear if the majority of individuals will benefit from annual shots against COVID-19 as protection against severe disease is intact.” 

Currently, the U.S. Centers for Disease Control and Prevention states that everyone ages 6 and older should get one updated Pfizer or Moderna COVID-19 vaccine to be up to date (referring to the vaccines currently available). People aged 65 or older may get a second dose, while those who are moderately or severely immunocompromised may get additional doses.  

In anticipation of fall demand, Pfizer, Moderna, and Novavax all began developing vaccines targeting XBB.1.5 months before this decision, reports CNBC. Preliminary data shows that their shots produce strong immune responses against all XBB variants.  

As for next steps, the FDA will consider the committee’s decision and likely issue an official recommendation shortly, reports NPR. The new vaccines are on track to become available by late September or early October.  

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When thinking about traveling this year, certain factors may give you pause: for instance, general pain and stiffness that comes from traveling with autoimmune arthritis, plus the risk of COVID-19 that you’ve had to grapple with for the past three years (especially if you’re immunocompromised).  

However, after years of canceling plans during the pandemic, you might be itching to see more of the world again — and we certainly don’t blame you.  

Here, rheumatologists weigh in with their best tips on what to consider before booking your tickets.  

Traveling With Pain

First, rest assured: Our experts largely agreed that there are ways to make travel with autoimmune arthritis possible, even if you experience chronic pain.  

“If patients with rheumatoid arthritis enjoy traveling, they should be open to it,” says Brett Smith, DO, a rheumatologist at Tennessee Direct Rheumatology and East Tennessee Children’s Hospital. “While patients have a disease that alters their daily life, we also want them to enjoy life and not hold back.” 

Prepare In Advance

The key for managing pain on your trip is planning in advance, bringing enough of the medications and supplies you’ll need, and keeping in contact with your doctor. The type of travel you’re embarking on will make a difference in how you manage aches along the way, too.  

“If you’re driving for an hour, that’s different than if you’re taking a plane across the country,” says Lawrence Brent, MD, Professor of Medicine at the Lewis Katz School of Medicine and Associate Director of the Rheumatology Fellowship Program at Temple University Hospital. “Navigating airports can be very challenging for someone not only in terms of pain, but also mobility.”  

Although they’re certainly not impossible to manage, Dr. Brent notes that airports are not always accommodating to those who have difficulty getting around.  

“You can do it, but it’s going to take you much longer,” says Dr. Brent. “It all depends on how much you want to do the trip and what you think you can do — plus your pain tolerance, which is very individual. If you’re going with someone who can help, that makes a big difference.”  

Keep Moving to Avoid Stiffness

During your trip, do your best to continue moving. You already know that with arthritis, particularly rheumatoid arthritis, stiffness is a common occurrence — and the longer you sit still, the more stiffness you’ll experience.  

If you do choose to fly this summer, opt for an aisle seat so you have easier access to get up and walk around during your flight. (Get a head start before your trip with these 30 tips and tricks to prevent arthritis morning stiffness.) You may also find it helpful to bring a pillow to make hard airplane seats a little more comfortable. 

It’s also worth considering the climate of the destination you’re headed to: “Warmer environments can be more beneficial for pain, stiffness, and function, so take that into consideration when choosing a destination,” says Dr. Smith.  

Stock Up On and Pack Medications

Talk to your doctor about getting enough medication ahead of time, so you’re prepared if you experience a flare or are delayed during your travels. 

“I usually offer patients with rheumatoid arthritis [or another type of inflammatory arthritis] a short course of steroids to take with them, just in case they have a flare,” says Dr. Smith.  

Of course, you’ll also want to triple check your luggage before you leave to make sure you have everything you need to take your medication.  

“Oral pills are easy, but if you’re taking a self-injection, make sure you have the appropriate packing materials and enough to last you through the trip — and maybe a couple of weeks extra,” says Nilanjana Bose, MD, MBA, a rheumatologist at Lonestar Rheumatology.  

Create a Communication Plan With Your Doctor

Talk to your doctor about how you’ll stay in touch during your trip. Most physicians have online portals, so even if you’re traveling abroad, all you need is access to the internet to contact them.

Although there are many ways to safely and comfortably travel even if you experience chronic pain, there are a few times in which your doctor may recommend rescheduling the trip: “If you’ve had a recent respiratory illness or a recent flare of your disease, or you’ve had your medicines adjusted, you might consider changing your travel schedule,” says Dr. Brent.  

Likewise, if you’ve just been diagnosed with a new underlying condition, you may want to pause to ensure you can adequately manage it before jetting off.  

Traveling During COVID-19

If you’re immunocompromised, there’s no one easy answer to whether you should travel or not in the age of COVID-19. It’s a decision that needs to be made between you and your doctor, but here are a few things to consider:  

• Are you up-to-date on your vaccines?
• Everyone aged 6 years and older should get 1 updated Pfizer-BioNTech or Moderna COVID-19 vaccine to be up to date, but those who are moderately or severely immunocompromised may get additional doses, per the U.S. Centers for Disease Control and Prevention (CDC). 
• Do you have a respiratory condition (rheumatoid arthritis can affect the lungs) or other risk factors for developing issues with COVID-19?
• What medications are you on and how do they affect your immune system?  
• For instance, rituximab is associated with an impaired response to SARS-CoV-2 vaccination in patients with rheumatic diseases, per an Annals of the Rheumatic Diseases report.  

Follow Standard Mitigation Efforts

If you’re immunocompromised and decide to travel, follow all necessary precautions such as spending time outside rather than in indoor public spaces, wearing a mask or respirator (like the N95 mask), and keeping your distance from others, per the CDC.  

“Carrying a bottle of hand sanitizer can also be an easy solution to lower the risk of infection while traveling,” says Dr. Smith. 

These preventive measures are helpful not only for avoiding COVID-19, but other illnesses like cold and flu. And of course, the benefit of traveling during this time of year is that you don’t have to be in crowded indoor spaces quite as much.  

“During the summer, you have the advantage of people being outside more, so you have more fresh air and you’re not cooped together like you are in the winter,” says Dr. Brent.  

Get Up to Date on All Vaccines

In addition to your regular COVID-19 vaccines and boosters, plus those that protect against pneumonia and shingles, consider what other vaccines may protect you from disease during your trip.  

“If you are traveling to an international location, update your vaccines according to public health guidelines and consult your rheumatologist about the potential need to hold any medications prior to or after vaccination,” says Dr. Smith. “Additionally, only eat and drink from reliable food and water sources while traveling.” 

Research the Destination You’re Going To

Consider what viruses might be circulating in the community you’ll be visiting.  

“If there is an endemic infection with an outbreak at the travel location, consider rescheduling the trip,” says Dr. Smith. “If you have an active infection close to travel time, also consider rescheduling your trip just to be cautious, since health care access will depend on the destination.” 

And of course, if you have symptoms of COVID-19 or any other illness, speak to your doctor right away. 

One last piece of advice from Dr. Smith: “Most importantly, try to enjoy life.” If that can include travel for you this summer, bon voyage. If not, still aim to enjoy little moments of adventure in your own community, whether it’s trying a new outdoor fitness class, visiting a park you’ve never been to before, or simply video chatting with a far-away friend.  

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It’s a fact of life: Viruses mutate. But it’s still concerning to see headlines touting the latest COVID-19 variant, especially if you’re high-risk for severe illness.  

You may feel like you were just getting comfortable enough to rejoin previous activities, then you heard about another strain with an ominous name. The latest one in the press is the XBB.1.16 variant, which is another Omicron strain that has been dubbed “arcturus.”  

This variant currently makes up 14.6 percent of cases in the United States, per the U.S. Centers for Disease Control and Prevention (CDC).  

The XBB.1.16 variant has been declared a “variant of interest” by the World Health Organization (WHO) and has had a weekly rise in prevalence globally. However, its global risk assessment has been determined to be low. In India, where XBB.1.16 is most prevalent, there has been a slight increase in hospital bed occupancy numbers, but the levels are still much lower than what was seen in previous waves of new variants.  

Available data doesn’t suggest that XBB.1.16 poses more public health risk compared to other circulating Omicron descendant lineages. However, it could become dominant in certain countries, according to the WHO. This might lead to a surge in case rates due to the variant’s growth advantage and its ability to evade immune responses (though no changes in severity have been reported in countries where it is circulating). 

For those who are immunocompromised, understanding this type of data can be challenging. Here, we break down how worried you should be when a new COVID-19 variant emerges — and what steps you can take to keep yourself safe.  

Why Do Viruses Mutate?

Although a virus mutation sounds like a scary plot in a sci-fi movie, it’s actually a very natural process.  

Virus variants occur when there’s a mutation to the virus’s genes. Mutations in viruses like SARS-CoV-2, the virus that causes COVID-19, are expected — all RNA viruses mutate over time, per Johns Hopkins Medicine. 

“Generally, people should expect this should happen,” says Sydney Ramirez, MD, PhD, an infectious disease doctor and researcher at the University of California San Diego and La Jolla Institute for Immunology. “All of the RNA viruses are pretty prone to having high error rates when making copies of themselves, so it’s not unexpected that we would see mutations in the virus over time.”  

Immunocompromised patients are at risk for prolonged infection with SARS-CoV-2. As such, researchers have found that highly mutated variants — which demonstrate fast, multistage evolutionary jumps — can arise during the course of persistent infection in these patients. Research shows that viral evolution in immunocompromised patients may be an important factor in the emergence of variants of concern, per The New England Journal of Medicine. 

“People who are going to clear the Omicron variant faster are people who have some preexisting immunity to it,” says Dr. Ramirez. “They’re going to be at the highest risk for not only getting infected in the first place, but not being able to clear the virus quickly. The longer you stay infected, the more chances there are for the virus to mutate.”   

How Concerned Should You Be About Virus Mutations?

It’s crucial to be informed and mindful of the potential for virus mutations, but always turn to reliable data to understand how new variants could impact your daily life. 

“I wouldn’t want people to be scared just because there’s a new variant, but I do think that people should be aware that if there is a new variant that’s causing a lot more cases, then that’s something to be concerned about,” says Dr. Ramirez. “The mutation rate that we’ve seen throughout the past three years plus has been much faster than what we would see with more established viruses like the seasonal flu.” 

There’s no need to panic — but it doesn’t hurt to take every measure you can to protect yourself, especially if you have a weakened immune system.  

If you read an article about a new variant, look for clues like how it affects hospitalization rate and how contagious it is (and if research shows it evades current treatments or vaccines). Also talk to your doctor about the overall hospitalization rate (currently, it is less than 10 daily admissions per 100,000 people, according to the U.S. Department of Health and Human Services). 

You should also consider your own risk factors: A slightly more contagious virus could be far more serious for someone who is severely immunocompromised compared to someone who is only slightly immunocompromised. 

“One reassuring thing is that since Omicron has taken over as the dominant variant, we haven’t seen dramatic shifts or changes in a way that’s rendered further resistance to our currently available vaccines or other treatments,” says Zachary Wallace, MD, a rheumatologist at Massachusetts General Hospital. 

Dr. Wallace says he usually tells patients that it’s important to monitor new variants, and to know how new variants affect the therapies and preventive measures currently available to protect you.  

What Steps Should You Take From Here?

Start by talking to your doctor about your risk factors, your vaccination status (and if you’re eligible for any new boosters), and available treatments should you get sick. Here are five questions to ask your doctor for a COVID-19 treatment strategy before infection.  

“The recommendations are going to vary based on what specific medication and condition you may have, but in general, we’re in a much better place now than we were two or three years ago in terms of the treatments we have available,” says Dr. Wallace. “And while for many of our patients the vaccines may be less effective based on certain medications they may be on, they still provide some level of protection for most.” 

That said, there are certain settings in which you may still want to be cautious if you’re immunocompromised, like a very densely crowded space that’s not well ventilated. Or, for instance, you may want to wear a high-quality mask if you’re traveling on a plane, adds Dr. Wallace. 

“Talk to your provider and get specific recommendations based on your treatment, condition, and comorbidities,” says Dr. Wallace. “Hopefully, we’ll continue to see new treatments and preventive strategies emerge for immunosuppressed patients who remain at risk for these things.” 

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If you live with migraine, every day can already feel unpredictable: Will a late lunch trigger a day-long episode? Will a restless night lead to an excruciatingly painful day?  

Throw the still ambiguous effects of long COVID into the mix, and things can seem even more unclear. One in every eight patients is affected by persistent symptoms after COVID-19, according to a 2022 study in The Lancet — and experts are still learning more about the effects of long COVID and migraine, specifically.  

In a 2021 meta-analysis published in Scientific Reports, researchers found that the most common long-term symptom in patients with COVID-19 was fatigue (58 percent), followed by headache (44 percent).  

Another 2021 study published in Annals of Clinical and Translational Neurology found that the following neurologic manifestations were most common:  

• Brain fog (81 percent) 
• Headache (68 percent) 
• Numbness/tingling (60 percent) 
• Altered taste (59 percent) 
• Loss of smell (55 percent) 
• Muscle aches/pains (55 percent)

Here’s what to know about the research behind long COVID and migraine, plus what to do if you experience migraine after being infected.  

Differentiating Between COVID-19 Symptoms and Long COVID

Head pain is the most common neurological symptom associated with COVID-19 infection, per a 2022 study in the journal Cureus. Headaches identified with COVID-19 are mostly migraine, tension-type headaches, or cough headaches located in the front or back of the head. 

“Headache is a fairly common symptom of COVID and sometimes it’s the most prominent symptom of COVID,” says Matthew Robbins, MD, a neurologist at Weill Cornell Medicine.  “Often, a headache can really outlast the viral presence itself.” 

For decades, researchers have also known about a condition called new daily persistent headache. Experts suspect that this condition, in which moderate to severe symptoms start suddenly, is caused by triggers like infection. People often develop new daily persistent headaches when they have a viral or bacterial infection such as COVID-19, Epstein-Barr virus (a key cause of “mono”), salmonella, E. Coli, and meningitis, per the Cleveland Clinic.  

Then, of course, there’s headache as a symptom of long COVID. However, it can be difficult to parse out if head pain is a result of long COVID or something else.  

“Headache is just so common overall,” says Dr. Robbins. “And 12 percent of people have migraine in any given year, which is a lot. So sometimes, because it’s so common in the first place, it’s hard to show that signal in long COVID — but it does happen.”  

A migraine is a headache that causes severe throbbing pain or a pulsing feeling, typically on one side of the head, per the Mayo Clinic. It often occurs with nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours or up to days and the pain can be extremely severe and interfere with your daily life.  

Factors That May Cause Migraine in Long COVID

There could be three potential causes of migraine related to long COVID, says Jagdish Khubchandani, PhD, a professor of public health at New Mexico State University:  

• The binding of viral spike protein to receptors in the brain and spinal cord 
• Systemic inflammation caused by COVID-19 that could lead to headaches 
• Release of other chemicals due to inflammation caused by COVID-19 or directly due to COVID-19 infection  

“There are many potential mechanisms that make a lot of biological sense,” says Dr. Khubchandani.  

In a recent 2023 pre-print study (meaning it hasn’t been peer-reviewed yet) posted on bioRxiv, hyperinflammation was involved in triggering the onset of post-COVID-19 condition-associated headache symptoms. Researchers note that sustained inflammation potentially contributes to the development of persistent long COVID headaches. 

In the case of autoimmune activation with inflammation, other parts of your body may be affected, too. 

“The same thing could happen in joints and in other parts of the body,” says Dr. Robbins. “It could be that COVID itself leads to some autoimmune activation with inflammation or release of molecules called cytokines that could be in the nervous system and lead to pain.” 

You may also be prone to migraine after COVID-19 if you have a family history of it.  

“One thing that I’ve seen with people who don’t really have a history of migraine but then they develop COVID, and then they develop headaches that are frequent thereafter that resemble migraine, is that you often find they had a migraine family history,” says Dr. Robbins.  

Meanwhile, a 2021 study found that migraine patients may have a higher risk of COVID-19 in general. Participants with migraine reported a higher incidence of COVID-19 and heightened COVID-19 symptoms, but they were also less likely to access health care than people without migraine. 

What If You Already Had Migraine Before COVID-19?

People who have migraines may experience worsening pain with long COVID.  

“Often, for people who already have migraine, it is triggered during a COVID infection,” says Dr. Robbins. 

Those who had occasional headaches or episodic migraine before may develop more chronic migraine with long COVID. Plus, some people may witness new onset migraines (one of the most common types of headaches reported after COVID-19 infection).  

“It depends on a person’s profile, risk of headaches, and a variety of other factors like chronic disease history, lifestyle, and so forth,” says Dr. Khubchandani. 

What to Do If You Start Getting Headaches After COVID

It’s difficult to predict who will have new onset headaches and migraines after COVID-19 infection, so the best course of action you can take is to monitor your symptoms and stay in close contact with your doctor.  

“Timely detection of migraines and long-lasting headaches is key to profile a person’s headache characteristics after COVID-19 infection,” says Dr. Khubchandani. 

Your health care provider may prescribe treatment if you develop migraine attacks. People respond well to traditional migraine treatments if they have long COVID-related migraines, adds Dr. Khubchandani.  

Common preventive treatments for migraine are those often used for other medical purposes as well — such as blood pressure drugs, antidepressants, or epilepsy medications, per Johns Hopkins Medicine. 

“A sizable minority of people can transform migraine into chronic migraine, which is something that we absolutely need to prevent,” says Dr. Robbins. “It’s very important to identify and very closely follow up people who get COVID and experience headaches, or who have migraine that might be frequent already, to be on top of this.” 

In general, maintaining a healthy lifestyle is also helpful for managing migraine attacks. In fact, frequent migraine that is accompanied by neurological symptoms is best treated preventively and usually with a combination of dietary modification, lifestyle changes, vitamins, and daily prescription medications, per Johns Hopkins. 

You may find it helpful to keep a symptom log: The good news is that in many cases, headaches may go away with time, says Dr. Khubchandani. However, it’s important to keep in touch with your doctor about changing symptoms.  

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Hear From Experts and Patients Living with Migraine

Talking Head Pain is a podcast that confronts head pain, head on. Brought to you by the Global Healthy Living Foundation and hosted by migraine advocate Joe Coe, this show explores how people living with migraine, cluster headache, and other types of intense pain find ways to better manage their disease. Listen here for a special episode on Migraine and COVID.

If you live with an inflammatory type of arthritis or rheumatic diseases, it’s crucial to know that health experts strongly recommend getting vaccinated against COVID. The American College of Rheumatology (ACR) has been actively urging patients like you to protect yourselves by rolling up your sleeve and getting vaccinated. This is because you be especially vulnerable to the severe outcomes if infected with COVID.  

According to Jeffrey Curtis, MD, Chair of the ACR COVID-19 Vaccine Clinical Guidance Task Force, although there is limited data from large-scale studies, there is concern that patients with autoimmune and inflammatory conditions are at a higher risk of hospitalization and experience worse outcomes with COVID infection compared to general population. “Based on this concern, the benefit of COVID-19 vaccination outweighs any small, possible risks for new autoimmune reactions or disease flare after vaccination,” he said in a 2021 ACR press release. 

Since then, the core message remains unchanged: individuals with rheumatic diseases are vulnerable, and the benefits of vaccination outweigh potential risks. However, as more data has been gathered, it has become evident that the likelihood of experiencing a flare after vaccination is not as minimal as initially hoped. 

About the Study

A recent study published in Rheumatology revealed that 1 in 10 people with autoimmune rheumatic diseases experienced a flare shortly after receiving a COVID vaccine. It is not entirely clear if the vaccine itself triggered the flare, as many patients temporarily halt their regular medication regimen before or after vaccination. 

Due to the fact that many of these patients are taking medications to suppress an overactive immune system, these medications may interfere with the immune-boosting effects intended by the vaccine. In light of this, the American College of Rheumatology (ACR) has provided clinical guidance advising patients to pause the use of certain medications for a period ranging from one day to two weeks before and/or after each vaccine dose. Adjusting the treatment plan may increase the likelihood of experiencing a flare following vaccination. 

Flares and Vaccination: Risk Factors and Benefits

The new study analyzed data from more than 15,000 patients and found that nearly 3,500 of them experienced a flare after receiving the COVID vaccine. Patients with multiple comorbidities, including multiple autoimmune disorders, were more prone to this issue. Those with underlying mental health disorders and those who received the Moderna vaccine had a higher likelihood of reporting a post-vaccination flare. 

However, there were positive findings as well. Users of mycophenolate and glucocorticoids were less likely to experience a flare after vaccination. It’s important to note that getting vaccinated significantly reduces the risk of contracting a COVID infection or experiencing severe illness. COVID infection itself is a risk factor for flaring. 

“We did find nearly one in 10 patients to experience a flare in the period after taking the vaccine,” the study authors told Healio Rheumatology. “However, additional analysis from our study (in press) identified that one in three individuals are at risk of flares after COVID infection, reiterating the importance of timely vaccination.” 

What This Means for You

The benefits of the COVID vaccine continue to outweigh the risks for individuals with rheumatic autoimmune conditions.  

It is advisable to consult with your doctor to carefully consider the advantages and disadvantages of temporarily suspending any of your regular medications in order to enhance the effectiveness of the vaccine. Your health care provider can provide guidance tailored to your specific situation and help you make an informed decision.

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“Zip your coat up or you’ll get sick!”

“Don’t stay cooped up! It’s not good for your immune system.”

You’ve likely received plenty of advice since childhood on how to avoid getting sick — but if you’re immunocompromised in the COVID-19 era, these little warnings can suddenly feel much more pressing.

Of course, not every piece of advice has merit, especially when it comes to something as complex as your immune system. Even researchers are still learning about what boosts or hampers immunity. Nevertheless, if you have a compromised immune system due to an underlying condition or medications that you take, it’s essential to be particularly vigilant in protecting yourself (and others) from infection.

“Being immunocompromised means that you have a weakened immune system, and therefore, you’re more susceptible to several conditions, including COVID-19,” says Christine Kingsley, APRN, Health and Wellness Director of the Lung Institute, who has cared for COVID-19 patients as a nurse.

So, pieces of advice actually have merit? Here are four common warnings that are genuinely effective in avoiding disease.

Eat healthier to boost your immune system.

While some labels may want you to believe otherwise, there is no magic bullet or mushroom elixir for avoiding illness. However, consistently consuming an unhealthy diet can hamper your immune system’s ability to fight off germs.

“A diet that consists of highly processed foods, including refined grains, deli meats, cookies, and chips, is known to weaken your immune system,” says Kingsley. “Poor diets may drive inflammation and cause bacterial imbalance in your gut, which can negatively affect your immunity.”

Although vitamin C is most famously associated with immunity, your immune system is complex and influenced by a network of factors — not just by diet — and certainly not by just one vitamin or mineral. However, malnutrition can impair the production and activity of immune cells and antibodies, according to the Harvard T.H. Chan School of Public Health.

Aim to eat a balanced diet with whole fruits, vegetables, lean proteins, whole grains, and plenty of water. If you cannot readily access this type of diet, a multivitamin may help you avoid malnutrition. “I don’t think we’ve found that [vitamin supplementation] makes a significant difference, but ensuring that any deficiencies are corrected may be beneficial,” says Stuart Campbell Ray, MD, Professor of Medicine and Vice Chair of Medicine for Data Integrity and Analytics in the Department of Medicine at Johns Hopkins Medicine.

In addition to this, a nutritious diet can help you maintain a healthy weight. Excess weight is associated with chronic inflammation because fat tissue generates adipocytokines that can trigger inflammatory processes. Although further research is required, obesity has been identified as an independent risk factor for the influenza virus, which may be due to T-cell impairment (a type of white blood cell), according to the Harvard T.H. Chan School of Public Health.

“It’s essential to consider what truly brings you joy and helps with stress,” says Dr. Ray. “We have a lot of evidence that stress has an impact on immunity, so there is a clear benefit to attempting to manage stress and finding things that are rewarding to you.”

Even if you’re cautious about how often you attend group gatherings and other events, you can still engage in activities at home such as meditation and yoga to help you manage chronic stress. For additional resources, read more about arthritis, mental health, and COVID-19.

You’re getting sick because you’re stressed out.

It may feel like it’s mostly mental, but stress has an impact on the rest of your body as well.

“Stress can cause your immune system to generate an inflammatory response, making you more susceptible to infections and viruses,” says Kingsley. “Stress also raises cortisol levels. Elevated cortisol levels can lead to the suppression of your immune system by reducing the production of white blood cells in your body.”

In particular, stress decreases your body’s lymphocytes, the white blood cells that help you fight infection, according to the Cleveland Clinic. The lower your lymphocyte level, the higher your risk for viruses, and the longer it takes your body to fight them.

“It’s important to consider what really gives you joy and helps with stress,” says Dr. Ray. “We have a lot of evidence that stress has an impact on immunity, so there is some clear benefit to trying to manage stress and finding things that are rewarding to you.”

Even if you’re cautious about how often you attend group gatherings and other events, you can still engage in activities at home like meditation and yoga to help you manage chronic stress. For additional resources, read more about arthritis, mental health, and COVID-19.

Too little sleep will wreck your immune system.

When you catch enough sweet z’s, you don’t just feel better — your immune system operates better, too.

“When you sleep, your immune system releases proteins called cytokines,” says Kingsley. “Cytokines influence the growth of all blood cells and other cells that aid your body’s immune responses. Without sufficient sleep, the production of cytokines may decrease, resulting in fewer antibodies.”

Not only does research indicate that people who don’t get enough quality sleep are more likely to fall sick after exposure to a virus, but a lack of sleep can also affect how quickly you recover if you do become sick, according to the Mayo Clinic.

“When we look at research, people with poorer sleep quality were much more susceptible to infection,” says Dr. Ray. “The worse their sleep quality, the worse their susceptibility was, so there’s a strong correlation.”

In a meta-analysis published in the journal Current Biology, researchers discovered that individuals who get more sleep at night produce a higher level of antibodies that can enhance the effectiveness of vaccines. Getting too little sleep (less than six hours per night) was linked to a substantial decrease in antibody response, especially in men, which is similar to the decline in COVID-19 vaccine antibodies over two months.

Remember: Adults require seven to eight hours of quality sleep every night. If you’re getting less than this, it could affect your immune system or the effectiveness of your recent vaccines.

You need fresh air — being cooped up isn’t good for you.

Getting outside alone may not have an impact on your immune system. “Lack of sun or fresh air are not factors in someone’s susceptibility that I am aware of,” says Norman B. Gaylis MD, FACP, MACR, a rheumatologist based in Aventura, Fla.

That said, SARS-CoV-2 viral particles spread between people more readily indoors than outdoors, where even a breeze can quickly reduce concentrations, per the U.S. Centers for Disease Control and Prevention. Plus, getting outside may make you feel happier and reduce your stress levels, which can be beneficial for your immunity.

It’s also possible that soaking up the sunshine could bolster your immune system, even though more research is needed. Patients with a “likely deficient” vitamin D status had nearly double the likelihood of testing positive for COVID-19 compared to those with a “likely sufficient” vitamin D status, per a 2020 study on a single testing center published in the journal JAMA Network Open. (Read more about the potential link between COVID-19 and vitamin D.)

“We know that people who have more susceptibility to COVID-19, and particularly severe COVID-19, have lower vitamin D levels,” says Dr. Ray. “What we don’t know is whether that link is causal. People with low vitamin D levels also tend to be vulnerable in other ways — they’re often people of color, people of low socioeconomic status, and have other risk factors.”

It’s also not just about being indoors versus outdoors. The quality of the air matters: Environmental factors can hamper your ability to fight off infection, especially when it comes to PM2.5, particles in the air that are 2.5 microns or less in diameter.

“These are tiny particles that are generated with indoor cooking and traffic — especially near freeways,” says Dr. Ray. “There’s good evidence that people who live in high PM2.5 environments are more susceptible to chronic lung disease and probably to respiratory infections.”

To avoid exposure to particle pollutants indoors, you can take measures such as the following, per the California Air Resources Board:

• Use exhaust fans that vent to the outdoors when cooking
• Don’t allow smoking in your home
• Use an electric or gas heater rather than a wood stove or fireplace (if you burn wood, use “seasoned” dry wood and make sure your fireplace or woodstove drafts properly)
• Limit the burning of candles and incense indoors
• Avoid air fresheners, cleaning products, and fragrances that have a pine or citrus scent, since these can react with ozone to form particles and formaldehyde

And of course, while eating healthy, reducing stress, getting enough sleep, and considering air ventilation and quality may help bolster your overall immune system, the most important thing you can do to avoid COVID-19 infection is to get vaccinated (and stay up-to-date with your boosters). Even if you’ve already recovered from a COVID-19 infection, the vaccine provides added protection against the virus, per the CDC.

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When you first realize you’ve tested positive for COVID-19, you may experience rushing thoughts and feelings, including:

• How can I keep this from getting worse?
• How do I get the treatment I need if I can’t leave home?
• Am I even eligible for treatment, and if so, which one?  

This can be a lot to sort out when you’re already feeling under the weather, but not getting the answers you need can affect your outcomes and the severity of your infection. That’s why it’s important to strategize a treatment plan with your doctor before you get infected, especially if you’re immunocompromised and at high risk for severe illness. 

“There’s no doubt that if you find yourself infected, you may get a lot of anxiety about what happens or what to do next,” says William Schaffner, MD, Professor of Infectious Disease at Vanderbilt University Medical Center. “It’s very reassuring to have a plan worked out in advance with your provider, because you can bring that forward and then proceed in the best way.” 

This is true even if you’ve already gotten COVID-19 and have recovered. You can be infected with COVID-19 multiple times, and although reinfections are often mild, they can be severe, per the U.S. Centers for Disease Control and Prevention (CDC). Starting treatment within days of developing symptoms can help reduce your risk of severe illness from reinfection.  

“Anyone can get recurrent COVID-19, as we have seen with many patients,” says Norman B. Gaylis MD, FACP, MACR, a rheumatologist based in Aventura, Fla. “There are a number of strains of the virus, and those who are immunocompromised are at higher risk and should therefore work with their doctor for a treatment plan for potential future infections.” 

This can also reduce stress for you when you’re sick. Dr. Schaffner points to his own experience of getting infected with his wife last summer. Although he knew what to do next, he didn’t have a specific plan, which sparked added worries and scrambling — particularly because he has an immunocompromised family member who also tested positive.  

“The next couple of hours were anxiety-provoking until my wife and I got our prescriptions for Paxlovid and our immunocompromised family member got to the clinic and received his treatment,” says Dr. Schaffner. “If we had a plan in place, including writing down who to call and what the phone numbers were, a whole lot of anxiety would have been spared.”  

To avoid finding yourself in a similar situation, here are five simple questions to ask your doctor today to create a plan for treatment options. 

How and when should I test for COVID-19 if I get symptoms?

Although you may have testing sites available near you, traveling outside of the home may be the last thing you want to do when you feel unwell (and may make it less likely that you test in time to receive treatment). If you can, stock up on testing kits at home, so you don’t have to scramble to find testing when you start feeling ill.  

“Have a conversation with your physician about which symptoms should encourage you to take a test,” says Dr. Schaffner. “And if there are symptoms that appear in your family members or caregivers, ask when they should be tested.”  

Symptoms of COVID-19 can appear two to 14 days after exposure and may include, per the Mayo Clinic:

• Notorious fever
• Cough
• Tiredness associated with the infection
• Nausea
• Diarrhea
• Pink eye or rash

If you have an underlying condition that causes symptoms like fatigue, keep a symptom log so you know when you’re experiencing something out of the ordinary. Have a conversation with your doctor about what symptoms should prompt you to take a COVID-19 test — and when in doubt, play it safe by testing.  

Keep in mind that the U.S. Food and Drug Administration (FDA) has extended the expiration dates for most at-home tests, so even if you’ve had a few stashed away for a while, you may still be able to use them.  

To find out, consult this table from the FDA. If the shelf life has been extended, you’ll find a link to updated expiration dates. If the table does not say the shelf life is extended, you should still go by the expiration date on the label of the test’s box. 

What treatments am I eligible for?

Regardless of your vaccination status, guidance from the CDC notes that symptomatic people who are immunocompromised, their household members, and their close contacts should be tested for SARS-CoV-2 infection as soon as possible and receive treatment within five to seven days of symptom onset. 

Early treatment of mild to moderate COVID-19 with a recommended therapy like ritonavir-boosted nirmatrelvir (Paxlovid) or remdesivir (Veklury) — or the second-line therapy, molnupiravir (Lagevrio) — have been shown to reduce the risk for severe COVID-19, including hospitalization and death, per the CDC.  

Paxlovid is Pfizer’s antiviral pill for COVID-19 and involves taking three pills twice daily for five days. The FDA compiled an eligibility screening checklist for prescribers to use as a tool when deciding if a patient should receive Paxlovid:   

• A positive SARS-coV-2 test 
• Age over 18 years or over 12 years and weighing at least 40 kilograms (about 88 pounds)  
• Has one or more risk factors for progression to severe COVID-19, such as having an immunocompromised condition or weakened immune system 
• Symptoms consistent with mild to moderate COVID-19  
• Symptom onset within five days 
• Not requiring hospitalization due to severe or critical COVID-19 at treatment initiation 
• No known or suspected severe renal impairment  
• No known or suspected severe hepatic impairment 
• No history of clinically significant hypersensitivity reactions to the active ingredients or other components of the product 

(Read more about what to know if you’re prescribed Paxlovid.) 

Meanwhile, Veklury (remdesivir) is still used by many U.S. hospitals, per Yale Medicine. Although it was originally authorized for critically ill patients receiving oxygen treatment, that authorization later expanded to other groups and, in January 2022, it was authorized to treat non-hospitalized patients. Remdesivir is administered via injection or IV.  

Finally, there’s the antiviral pill Lagrevio, developed by Merck and Ridgeback Biotherapeutics. It involves taking four capsules every 12 hours for five days, and like Paxlovid, it must be taken within five days of symptom onset.  

When you’re creating your action plan with your doctor, ask about what role your current medications may play in your susceptibility to COVID-19 and the treatments you may be prescribed if you’re infected.  

“Patients should ask their physician if they are able to tolerate the treatment plan itself,” says Dr. Gaylis. “They should ask if they are more susceptible to COVID-19 and, if they contract it, if they can continue other treatments such as those for rheumatic conditions.” 

Who should I call to get these medications prescribed if I test positive?

It’s important to get treatments as soon as possible after symptoms appear. If you need to wait days to book a doctor’s appointment to get a prescription, you miss out on your window of opportunity.  

“Know what you should do next after you test positive, including who you should call or email, and if you are eligible for Paxlovid or another treatment,” says Dr. Schaffner. “Have it all down on paper as part of the plan — and make sure you know who to report to in order to initiate the treatment and prevent more severe disease.”  

COVID-19 medications must be prescribed by a healthcare professional, per the U.S. Food & Drug Administration. (In July 2022, the FDA authorized state-licensed pharmacists to prescribe Paxlovid.) 

Also ask your doctor about the best way to communicate with them about your symptoms, so you know when treatment needs to be escalated. For instance: Should you contact your doctor via a patient portal, calling their office, emailing, or something else? What should you do if it’s a weekend or holiday and their office is closed?  

What options are available for accessing these treatments?

You can get prescriptions for treatment like Paxlovid through your health care professional, pharmacies, hospitals, and health clinics. 

Some pharmacies can deliver medication like Paxlovid. If this isn’t an option for you, ask a family member or friend in your close network can pick up your prescription for you and leave it at your doorstep if you’re sick with COVID-19.  

There are also test-to-treat locations where you can test for COVID-19 and get treatment, if eligible, all in one spot — you can find one using this locator. 

Am I up to date on all vaccine recommendations?

Talk to your doctor now about all possible precautions you can take to avoid severe illness. Asking if you’re up to date on your vaccinations and boosters should be part of a larger conversation about your risk mitigation efforts.

“Anyone, including the immunocompromised, should use the standard precautions to keep themselves safe from COVID-19,” says Dr. Gaylis. “At the top of that list would be to avoid situations that involve crowds of people where distancing is not an option.” 

When Evusheld was no longer authorized to prevent COVID-19 due to its waning efficacy against new variants, the CDC underscored the importance of preventive measures for immunocompromised patients — which include learning about treatment locations and options before getting sick.  

Taking these steps will make it more likely that you recover from COVID-19 quickly and without severe symptoms. 

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When you think about common symptoms or lingering effects of COVID-19, you may think about loss of taste and smell or a persistent cough, but you may not have considered hair loss.  

However, many patients have reported experiencing hair loss after being sick— not just with COVID-19. Temporary hair loss, known as telogen effluvium (TE), can occur after events like illness, childbirth, severe stress, and fever. This type of hair loss happens when more hairs than normal enter the shedding, or telogen, phase of the hair growth cycle. 

“This type of hair loss isn’t unique to infection COVID-19,” says board-certified dermatologist Shoshana Marmon, MD, PhD, FAAD, Assistant Professor and Director of Clinical Research in the Department of Dermatology at New York Medical College. “Any type of severe stress can trigger it. It may be stress on your body from illness or severe emotional stress such as the death of a loved one.”  

In a 2022 study published in the Journal of Medicine and Life, 48 of 198 patients admitted for COVID-19 showed hair loss — none of whom had previous TE. Of these patients, 79 were male (39.9 percent) and 119 were female (60.1 percent), and their ages ranged from 18 to 85.  

The good news: This type of hair loss is usually temporary and not permanent. Once the trigger is removed, the hair follicles return to their normal growth cycle, and the hair shedding decreases.  

Understanding Hair Loss and COVID

The process of hair follicles returning to their normal growth cycle after TE can take three to six months (and in some cases, up to a year). However, some people may experience a more persistent form of the condition called chronic telogen effluvium. 

Certain populations may be more prone to experiencing TE after being sick. “Theoretically, anyone is at risk for hair loss after COVID-19, but based on the literature, it is most commonly reported in women, individuals with severe or prolonged infections, and those with preexisting hair loss or nutritional deficiencies,” says Dr. Marmon. 

Those who are immunocompromised are more vulnerable to severe infections, including severe COVID-19, and prolonged symptoms, which may put them at higher risk of developing TE due to the physical stress of the illness. “During periods of elevated community transmission, immunocompromised individuals may wish to take extra precautions,” says Dr. Marmon. 

These precautions may include: 

• Wearing a mask 
• Practicing good hand hygiene 
• Maintaining social distancing 
• Staying up to date on your vaccines, including the COVID-19 vaccine and the flu shot 

Nutrition, particularly iron, biotin, and vitamin D, can also play a role, according to the Cleveland Clinic. For instance, if you have low iron levels, your body may prioritize making red blood cells over supporting hair growth. 

If you have recently recovered from COVID-19, you may not experience the effects of TE right away. Typically, it occurs about two to four months after the infection or triggering event. This delay is because the majority of hairs on your head (85 to 90 percent) are in the growth phase, known as anagen. Only about 10 to 15 percent are in the resting/shedding phase. A severe emotional or physical stressor like COVID-19 can push more hairs into the resting/shedding phase, also known as telogen. 

Telogen has a resting phase of two to four months, followed by the shedding phase. Due to this time lag, patients are often unaware of the connection between a stressful event and hair shedding. 

This type of hair loss is diffuse, meaning there are no specific bald spots on your scalp. Instead, you may notice that your ponytail seems thinner or you have less volume overall in your hair. 

“Patients typically notice the condition when they are washing or styling their hair, because significantly more hairs will be around the drain or on the brush,” says Dr. Marmon. “They sometimes say their hair comes out in clumps when they run their fingers through it, which can be very distressing.”  

To help ease any stress caused by hair loss, it’s important to remember that TE is a common condition and usually resolves on its own within a few months. However, if you do notice hair loss, it’s best to speak to your dermatologist for a thorough examination of your scalp, medical history, and to rule out any more serious conditions. 

If you experience any other unusual symptoms such as a rash, itchy scalp, or burning, it’s also important to see your dermatologist as it may indicate a different condition causing hair loss, according to the American Academy of Dermatology Association. 

Tips to Cope with Hair Loss

While hair loss due to TE is temporary, hair regrowth can take some time as hair grows at an average rate of one centimeter per month, according to Massachusetts General Hospital. This means that if you have shoulder-length hair, it may take around 2.5 years for your ponytail or the length of your hair to feel normal again. You may also notice short hairs growing on the top of your scalp, which will eventually catch up with the rest of your hair. 

During this time, a few lifestyle habits can help you handle hair loss from TE, including:  

• Managing anxiety and stress as much as you can 
• Avoiding aggressive hair treatments, chemical processes, and tight styling 
• Maintaining a well-balanced diet  

While you may not need treatment since telogen effluvium usually resolves on its own, your dermatologist may recommend over-the-counter medications you apply to your scalp like minoxidil (Rogaine), multivitamins or supplements that contain iron or biotin, and hairstyles or wigs and weaves that help obscure the hair loss.  

Above all, don’t panic. Be patient and give it time to resolve. 

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If you’ve had COVID-19, you may be more likely to develop gastrointestinal disorders like heartburn or gastroesophageal reflux disease (GERD) in the year after your infection than those who were never infected, per a new study in Nature Communications.   

Researchers analyzed data from the U.S. Department of Veterans Affairs national health care databases and built a cohort of 154,068 people with COVID-19. They also created a set of more than 5.6 million controls who did not have COVID-19 during the same time and 5.8 million historical controls (from before the pandemic) to compare.  

They found that beyond the first 30 days of infection, gastrointestinal (GI) disorders were 36 percent more likely in people with COVID-19 compared with people who had not been infected. The most common diagnoses were illnesses related to acid, such as GERD and stomach ulcers.  

Compared with patients in control groups, those who had been infected with COVID-19 had a: 

• 62% increased risk of ulcers in the lining of the stomach or small intestine 
• 54% increased risk of irritable bowel syndrome 
• 54% increased risk of digestive symptoms such as constipation, diarrhea, bloating, vomiting, and abdominal pain 
• 47% increased risk of inflammation of the stomach lining 
• 46% increased risk of acute pancreatitis  
• 36% increased risk of an upset stomach without an obvious cause 
• 35% increased risk of acid reflux disease 

The gastrointestinal system includes the mouth, throat, esophagus, stomach, small and large intestines, rectum and anus, and organs that produce enzymes to aid in the digestion of food and liquids — such as the liver and pancreas. GI conditions can range from mild issues like stomach upset to potentially fatal conditions such as liver failure and acute pancreatitis. 

What These Findings Mean

“At this point in our research, the findings on the GI tract and long COVID did not surprise us,” said senior author Ziyad Al-Aly, MD, a Clinical Epidemiologist at Washington University, in a press release. “The virus can be destructive, even among those considered healthy or who have had mild infections. We’re seeing COVID-19’s ability to attack any organ system in the body, sometimes with serious long-term consequences, including death.”

Dr. Al-Aly’s prior research has found that COVID-19 may have lingering effects on the brain, heart, kidneys, and other organs. In fact, his work has identified about 80 adverse health outcomes associated with long COVID. That said, experts have not yet pinpointed a uniform definition for long COVID. (Here’s what you should know about long COVID risk factors if you’re immunocompromised.)  

The researchers estimate that COVID-19 infections have contributed to more than 6 million new cases of GI disorders in the U.S. and 42 million globally. 

“Taken with all the evidence that has accumulated thus far, the findings in this report call for the urgent need to double down and accelerate our effort to develop strategies to prevent and treat the long-term health effects after COVID-19 infection,” added Dr. Al-Aly. 

Gastrointestinal issues can sometimes involve a long, difficult path to diagnosis, which requires patients to advocate for themselves. Read about one man’s journey to getting diagnosed with ulcerative colitis — and how he finally found the answers he needed.  

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Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.