A Guide to Living With RA During the COVID-19 Pandemic: Help, Resources, and Making a Personal Checklist

Medically Reviewed
A-Guide-to-Living-with-RA-During-the-Covid-19-Pandemic-722x406
Don't miss this collection of checklists, tips, and resources.iStock (2)

Whether you’ve been newly diagnosed with rheumatoid arthritis or have had the disease for many years, the emergence of COVID-19 has added an unnerving element to your life.

As the novel coronavirus continues to spread, you know you must take extra precautions to protect your health. This of course is in addition to all the ways you currently control rheumatoid arthritis (RA), an autoimmune condition in which the immune system attacks and damages certain joints, leading to pain, inflammation, and other complications.

People with RA have many questions: How can I best protect myself from the coronavirus? What might happen if I contract it? Should I see my doctors via telehealth or in person? What if I can no longer afford crucial RA medicines? And so much more.

Our Everyday Health guide for people living with rheumatoid arthritis in the age of COVID-19 offers you the most accurate and current information available.

Managing Chronic Diseases During the COVID-19 Pandemic

Recorded 5/28/20. Self isolation and fears about COVID-19 pose a whole new set of challenges for people with chronic conditions. Hear from three patients on how they manage their chronic conditions during the pandemic.
Managing Chronic Diseases During the COVID-19 Pandemic

How Contracting COVID-19 May Affect Rheumatoid Arthritis

As soon as it became clear that COVID-19 was a serious disease, people with all manner of chronic conditions, including rheumatoid arthritis, worried about whether they were at increased risk.

The answer turns out to be complicated, which is why people with RA are wise to take precautions to stay safe.

Does Having Rheumatoid Arthritis Put You at Higher Risk for Contracting COVID-19?

Although the disease is new and new information bubbles up daily, having RA by itself does not seem to elevate your risk of getting COVID-19 or having a worse outcome, says Ellen M. Gravallese, MD, the chief of rheumatology, inflammation, and immunity at Brigham and Women’s Hospital in Boston and the president of the American College of Rheumatology (ACR).

The same cannot be said for many complications or conditions that often come along with rheumatoid arthritis, or for medications people with RA commonly take.

The prolonged use of corticosteroids and other immune-weakening drugs may increase your chances of contracting the coronavirus. Still, it’s critical that you do not stop taking these drugs without a thorough discussion with your physician.

The most common and well-documented RA cormorbidity is heart disease. Most people develop ischemic heart disease, but RA patients may also have peripheral vascular disease, atrial fibrillation, infections of the outer lining of the heart (pericarditis) or heart muscle (myocarditis), heart attack, and congestive heart failure.

According to the Centers for Disease Control and Prevention (CDC), people with serious heart conditions may have a more severe illness if they contract COVID-19. If you do get the virus, you’ll want to pay extra attention to cardiac symptoms like being short of breath, having chest pain, or an irregular heartbeat, and call 911 immediately if you experience them.

Another concern for people with RA is their higher risk for stroke. This is especially worrisome in light of reports that some patients who develop COVID-19 experience a stroke as a result of the illness.

RELATED: What People With Heart Disease Need to Know About COVID-19

Then there are lung diseases, including asthma, chronic obstructive pulmonary disease (COPD), or interstitial lung disease, which up to a third of people with RA develop. This is another condition thought to increase the risk of coronavirus complications. As much as possible, avoid triggers that worsen your lung symptoms. Kidney disease, which may be caused by certain RA medications, is yet another potential difficulty.

RELATED: A Guide to Living With COPD During the COVID-19 Pandemic: Help, Resources, and Making a Personal Checklist

If you have any of these comorbidities, work with your doctor to develop a plan. Stay on all medications your doctor has prescribed. If possible, keep an extra supply of meds on hand to reduce trips to the pharmacy, the CDC advises.

Are There Extra Safety Precautions People With RA Should Take to Avoid Exposure?

Those at high risk for complications of COVID-19 need to take the same precautions as everyone else — but must be super vigilant about it.

This includes following CDC recommendations to wash your hands often, keep the proper social distance of at least six feet from others, avoid people you know who have the disease (including someone in your own home), wear a cloth face covering when you go out, and stay home as much as possible.

You’ll also want to safely handle food and groceries you bring into your house, such as by wiping down packages and the countertops they come in contact with.

Now that states are loosening restrictions that kept everything closed, it’s important for people at higher risk to use extra discretion, says Lynn Ludmer, MD, the medical director of rheumatology at Mercy Medical Center in Baltimore. “You can’t change the behavior of other people who may not be following the rules, so you need to be cautious yourself,” she says. This doesn’t mean you should never go out, but it’s smart to limit yourself to outdoor locales and places adhering to deep cleaning and social distance guidelines.

Because guidelines vary in part by how much virus is circulating in your area, you’ll want to stay on top of local recommendations issued by your community's public health officials.

Even if you are healthy now (and hopefully will stay that way), take a few minutes to create a plan in case you do catch the disease, such as determining who would deliver your food or watch your children, and stocking up cold medicines and tissues.

How Will Rheumatoid Arthritis Be Affected if You Test Positive for COVID-19?

COVID-19 is such a new disease that no one can say whether your condition could worsen if you do develop the illness.

In the hopes that such information can become known, a group of rheumatologists have banded together to form the COVID-19 Global Rheumatology Alliance. Healthcare providers around the world are documenting their RA patients’ experiences with the coronavirus. In addition, people with RA who develop COVID-19 are asked to complete their own survey for the group.

“It’s important to tell your rheumatologist if you have COVID-19 so they can put you in the registry, along with advising your medical team about medications,” Dr. Ludmer says, even though your coronavirus will likely be treated by a different physician. This is the only way rheumatologists can eventually answer important questions about how both diseases interact, she says.

Your RA Treatment Checklist During This Pandemic: How to Be Prepared

People with rheumatoid arthritis have special concerns about continuing to take medications that control your RA, affording these pricey drugs in times of widespread economic distress, and how you might helpfully boost your immune system.

Are There Changes to Formal RA Treatment Guidelines to Follow?

Information about RA medications’ effects on the coronavirus is still in its infancy. Research is underway to answer many questions about how medicines taken for RA might affect COVID-19. In the meantime, medical organizations have offered guidance based on the scientific evidence as it is currently known. As more information becomes available, this will be refined or changed.

Recently, the American College of Rheumatology (ACR) convened a panel of experts to assess whether people with RA should make changes to their medications. Their preliminary guidance, published in Arthritis & Rheumatology in April 2020, concludes that you should stay on the medications that are currently working if you’re not sick with COVID-19 or know that you’ve been exposed to it.

Each person’s situation is unique, of course, so you should confer with your doctor for your own best course of action.

Specifically, the ACR recommends that people not currently or potentially ill with the coronavirus generally continue with their nonsteroidal anti-inflammatory drugs (NSAIDs), disease-modifying antirheumatic drugs (DMARDs), hydroxychloroquine (Plaquenil) or chloroquine (Aralen), immunosuppressants, biologics, Janus kinase (JAK) inhibitors, and other meds.

If your disease is newly diagnosed or currently flaring, your doctor should treat you as they did before the virus emerged. This includes starting needed glucocorticoids, NSAIDs, DMARDs, or biologics.

Going on or staying on medications that tame your RA may even help your body battle COVID-19 should you come down with it. For instance, uncontrolled inflammation has negative consequences for the body, Dr. Gravallese says.

A Top Pharmacist's Tips for Safely Ordering Meds Online

Recorded 5/27/20. How to manage medications during the COVID-19 pandemic.
A Top Pharmacist's Tips for Safely Ordering Meds Online

Are There Any Prescribed Medications That May Now Be Unsafe to Take Due to COVID-19?

The ACR expert panel had greater concerns about remaining on immunosuppressant meds if you have been diagnosed with COVID-19 or believe you have been exposed to it.

If you have been exposed, talk to your doctor about possibly stopping your immunosuppressants, non-IL-6 biologics, and JAK inhibitors temporarily. You’ll want to remain off these drugs until you either get a negative COVID-19 test result or pass two weeks without symptoms. Glucocorticoids should not be stopped abruptly, the experts caution.

Once you are diagnosed, the ACR recommends additional changes to your medications to assist your body in fighting the disease.

This includes stopping sulfasalazine (SSZ, sold under the brand name Azulfidine)methotrexate (Rheumatrex, Trexall), leflunomide (Arava), immunosuppressants, non-IL-6 biologics, and JAK inhibitors until you are well.

It is important that you speak with your rheumatologist before stopping any drug, which, alas, not everyone seems to be doing. A survey of 500 people with rheumatoid diseases published in ACR Open Rheumatology in April 2020 found that 14 percent of respondents admitted to making self-imposed changes to their medication list or dosage.

What Resources Are Available if You Can No Longer Afford Your Medications?  

According to the Kaiser Family Foundation (KFF), most people who have lost their insurance in the pandemic will qualify for ACA insurance or Medicaid. If this is you, check out your state’s insurance marketplace to apply (a list is here). If your state isn’t on the list, go to HealthCare.gov to see if you nonetheless qualify for special enrollment under a qualifying life event, or otherwise visit the site during the annual open enrollment period.

You can also explore applying for Medicaid at any point during the year. This tool at HealthCare.gov will help you determine if your income qualifies you for it.

You may also qualify for free or low-cost medication through a drug manufacturer on the basis of your income or insurance status. Below is list of patient assistance programs for certain name-brand medications to treat rheumatoid arthritis. Many will also have information about discount copay cards or coupons.

Some companies provide drug discount cards, compare discounts or provide drugs directly to the consumer for savings. Among them are:

If you have run out of options for affording your medication, go to your healthcare provider to see if there are less-expensive options for treatment, such as generic medications or alternative ones that cost less.

For more information on the drug assistance programs from pharmaceutical companies or others that provide discounts, check out Rheumatoid Arthritis: What to Do When You Can’t Afford Medication.

What Can Someone With RA Take to Safely Boost Their Immune System?

“It is preferable that people with RA discuss any supplements they want to take with their doctor,” Ludmer says. “RA is an autoimmune disease where the immune system is working in overdrive to attack the body. Certain supplements that boost the immune system can be counterproductive,” she says.

Because COVID-19 is so new, very few studies have documented if any supplements might armor up your immune system against it. But several have shown promise with other respiratory conditions.

One with a bit of research on COVID-19 is vitamin D. European researchers published a study in the Irish Medical Journal in May 2020 showing that countries whose populations have lower levels of vitamin D are the ones with higher COVID-19 infections and deaths. This does not prove that the D deficits are the cause of these results, only that there is a correlation.

Other supplements seem to help reduce the severity of some respiratory conditions, although they have not been studied for the novel coronavirus. They do not, however, keep anyone from coming down with a disease.

This includes elderberry, which may help people recover from the flu; probiotics, which the Arthritis Foundation notes have been shown in preliminary studies to improve the immune response to a virus; and vitamin C and zinc, which seems to shorten the duration of the common cold.

Managing RA, Mental Health, COVID-19 Concerns, and You

When your life has been turned upside down by the arrival of the coronavirus — including massive job insecurity and the inability to gather with family and friends — it’s understandable that rates of anxiety and depression are rising.

People with RA are especially at risk. Even in the best of times, people with RA are more likely to suffer from anxiety and depression, whether because of constant pain, the loss of one's old life, or possibly because of underlying inflammation.

You should not simply suffer in silence, though. Taking action will help.

RELATED: COVID-19: Protecting Our Mental Health While We Ride Out the Pandemic

Can Anxiety About the Coronavirus Make RA Worse?

People with RA know that being in stressful situations can cause your disease to flare. Research published in the journal Arthritis Research and Therapy confirms that “stress can … induce symptoms such as pain.”

With all the bad news about COVID-19 and its societal and economic effects, it’s easy to worry, but negativity can worsen RA symptoms. Researchers at Penn State University in Philadelphia concluded in a study published in the February 2016 Annals of Behavioral Medicinethat having a more positive mood in the moment is associated with less pain and fewer arthritis-related activity restrictions, while a negative mood is linked to extra activity restrictions.

Of course, you can’t change what’s happening. But you can take steps to reduce your own stress level. Recommendations by the CDC include limiting your consumption of news stories and social media posts about the pandemic, making time for enjoyable activities in your home, taking care of yourself by eating and sleeping well, and stretching or meditating.

Professionals suggest consciously shifting your focus from things you can’t control (for example, whether you’ll have a job next month) to those you can (what expenses you can curtail).

Can Depression About the Coronavirus Make RA Worse?

As with anxiety, a deepening depression brought on by coronavirus concerns can exacerbate RA symptoms.

It’s no surprise that with all the coronavirus fears, more of us are susceptible to bouts of depression, especially if you are isolating without loved ones, according to a review published in February 2020 in the Lancet.

Depression and RA are intricately linked, with rates of depression double to quadruple the levels in the general population. This can create its own negative loop, because being depressed can worsen your perception of pain, so your joints hurt more than they did before you were blue.

If you are depressed, let your doctor know, because medication or psychotherapy may be needed.

Managing RA-Related Doctor’s Appointments

Visiting your doctor, whether it's to deal with disease exacerbations, receive an infusion, or have a routine checkup, has become more complex. In some instances, telemedicine appointments are perfectly fine. In others, seeing your doctor face-to-face is important. Fortunately, medical offices are taking precautions to keep you safe.

Should You Continue to Go to Regularly Scheduled Doctor’s Appointments?

Medical experts say that for the most part it’s important to keep your regularly scheduled appointments. This includes those with your rheumatologist, but also your cardiologist or other specialist, eye doctor, primary care physician, gynecologist, dermatologist, and others.

If you feel fine, you may be able to delay your regular appointments for a short while. But don’t put them off too long, because this can harm your health. If you’re having a flare or have other symptoms causing concern, see your doctor as soon as you can. The risks to your health from exacerbating a disease you already know you have are higher than the prospect you’ll catch the new coronavirus, experts say.

Routine annual screenings like eye exams, skin checks, and well-woman visits are also important and should not be abandoned. In general, annual checkups, such as a complete dermatology screening, are best done in person.

Are There Any Extra Precautions to Take for In-Person Appointments?

Both you and the medical office you are visiting need to take extra precautions.

Doctor's offices and other medical facilities should be following guidance from the Centers for Disease Control and Prevention (CDC). This includes ensuring that their staff does not come to work with a cough or other symptoms, that every employee has sufficient personal protection equipment (PPE), that spaces are cleaned frequently, and that patients have room to practice social distancing from one another.

If you need to schedule an infusion, know that centers are required to adhere to ACR guidance for safely administering these medicines, including spacing chairs in waiting rooms and infusion rooms and disinfecting between patient visits.

Are Virtual Doctors’ Visits as Effective as In-Person Visits?

In some cases, skipping an in-person visit and seeing your doctor via telemedicine may make sense.

A guidance paper about urgent versus non-urgent medical care posted by the ACR on its website concludes that a virtual visit can be sufficient when both doctor and patient are comfortable with that choice.

The decision of whether to have a virtual visit is different for each person and each situation, depending on the state of disease, current treatment protocol, and the individual’s level of risk tolerance, says Kelly Weselman, MD, a rheumatologist in Smyrna, Georgia, the chair of the ACR’s COVID-19 Practice and Advocacy Task Force, and a member of the group’s board.

What Type of Appointment Should You Do Virtually Vs. In-Office?

You and your doctor should together decide if you can do your appointment virtually or whether your health would be better served by coming into the office.

In its guidance on medical care for those with RA, the American College of Rheumatology points to specific situations where hands-on care is needed.

  • If you are newly diagnosed with RA Because a diagnostic exam involves a careful assessment of your joints and your ability to move them, new patients need to be seen in a doctor’s office.
  • If your disease is flaring Your doctor must look closely to assess the cause of exacerbations, especially since an infection could be involved.
  • If you need an injection or infusion This is best done in a professional healthcare setting.

RELATED: What Telemedicine Can — and Cannot Do — for People Living With RA During the Pandemic

What to Expect at a Telehealth Rheumatologist Appointment and How to Get Prepared

Your doctor should review all symptoms you've experienced since you were last seen, go over your lab test results, and discuss your medications, says Vinicius Domingues, MD, a rheumatologist and the medical adviser to CreakyJoints. He notes that while doctors cannot perform a full physical exam through a screen, “I can see a swollen knee via telemedicine and make the determination that the patient needs to come in for a shot.”

To get prepared for your telehealth appointment:

  • Check your insurance coverage. Private insurance differs across the board in their coverage of telehealth appointments and at what rate. Some cover video visits but not phone. Many are now following the example of Medicare and Medicaid, which have loosened restrictions to provide more coverage of phone-only visits and allow healthcare facilities to use platforms such as FaceTime, Zoom, and Skype.
  • Set up the correct technology and test-drive it before your appointment. Check your camera and microphone to ensure they are enabled. If you don’t have access to the internet and need a phone consultation, most offices will make that accommodation.
  • Have a pen and paper handy. Most in-person visits end with the doctor handing you a clinical summary of what’s been discussed. Since that isn’t possible here, be prepared to take notes.
  • Write down your questions. According to studies, doctors tend to spend more time with patients and don’t interrupt as much when on telemedicine as in person, so you’ll have more time to find out what you want to know.
  • Have your pill bottles ready. Your doctor will want a list of your medications, supplements, any symptoms since you last spoke, and information from your insurance card.
  • Surround yourself with the right people. Having a trusted and tech-savvy person nearby during your appointment can help ensure you understand everything and avoid any glitches.

RELATED: Telemedicine for Physical Therapy: It Works!

Why Long-Term Health Planning Is More Critical Than Ever for People With Chronic Conditions

Recorded 5/29/20. COVID-19 has made long-term health planning more critical than ever for people with chronic conditions.
Why Long-Term Health Planning Is More Critical Than Ever for People With Chronic Conditions

6 Tips From Experts for Living With RA During the Coronavirus Pandemic

Who knows when life will get back to normal — or what that new normal will be? If you have rheumatoid arthritis, you need to be extra careful during this COVID-19 pandemic because your medications may lower your immune system’s capabilities. Chris Phillips, MD, the chair of the American College of Rheumatology’s insurance subcommittee and member of the ACR’s Committee on Rheumatologic Care, tells us how to play it safe and healthy.

  1. Do not change or go off your medications without consulting your healthcare provider first. Rheumatologists are seeing cases of RA patients stopping their medications because they are concerned that the immunosuppressant properties will make them more vulnerable to contracting the coronavirus. “If you go off the medicine without checking with your doctor, you run the risk of having a significant flare of underlying disease, which you then may or may not get back under control successfully when you go back on treatment,” says Dr. Phillips, adding, “we don't have any concrete data yet to actually tell us that being on treatment for rheumatoid arthritis increases the risk of contracting COVID-19 or its complications, although it is being looked at on a global level.”
  2. Stay in touch with your physician. Even if you can’t be seen in person, use telemedicine to discuss issues and concerns.
  3. Be extra diligent about sticking to safety guidelines. The CDC has complete instructions. (Keep checking back because sometimes they are updated.) CreakyJoints offers a downloadable guide called A Rheumatology Patient's Guide to Optimal Care During the Coronavirus Pandemic.
  4. Take care of your mental health. In a March 25, 2020, tracking poll conducted by the Kaiser Family Foundation, 45 percent of respondents said the current pandemic is taking a major or minor toll on their mental well-being. “There's such a strong mind-body interaction that we see in people with arthritis and chronic pain, so it’s important to manage your anxiety and depression,” says Phillips. Stay socially connected responsibly (through Zoom, Skype, the phone); practice meditation, mindfulness, and yoga; and whatever you do, don’t stayed glued to the news all day. If need be, therapists are available via telemedicine.
  5. Exercise and eat a healthy diet. If you are immobile, you risk further joint deterioration. And bingeing on unhealthy foods will negatively affect your weight and immune system.
  6. Limit alcohol. While it’s true that it’s always five o’clock somewhere, excessive alcohol use is detrimental to the immune system.

RELATED: Tippi COVID-19

Trusted Resources We Love to Help Those With RA in COVID-19 Times

There’s a lot of misinformation circulating these days. Resources from these groups are chock-full of accurate facts you can rely on.

Additional reporting by Beth Levine and Sheryl Huggins Salomon.