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This has been reviewed and updated as of May 23, 2020.
If you’re living with rheumatoid arthritis (RA), you may be considered some degree of immunocompromised. First, RA itself causes a dysregulation of your immune system (recognizing your joints as the enemy — and causing inflammation as a result). Second, many people with rheumatoid arthritis take medications that affect the immune system to manage their symptoms.
“RA patients are thought to have slightly impaired immune systems regardless of whether or not they are on active therapy,” says Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida.
Certainly, this is a challenge under normal circumstances, but it can raise even more questions and concerns during the coronavirus pandemic.
People with rheumatoid arthritis may be considered in a higher-risk group for potential COVID-19 complications, although there is not yet a large amount of data on the RA patient population to know how patients fare when infected with coronavirus compared to people without RA.
Here is what rheumatology experts want rheumatoid arthritis patients to know — based on what is known so far — about staying safe and managing their condition as the coronavirus pandemic continues.
What We Know So Far
“The fact that we stratify [people with RA] as possibly being at a higher risk is to create extra awareness — not to create fear,” says Dr. Domingues.
Not only can people with RA have compromised immunity, but they may also have more co-occurring conditions associated with COVID-19 complications than the general population, including diabetes, heart disease, obesity, and COPD.
In guidance recently issued from the American College of Rheumatology (ACR) and published in the journal Arthritis & Rheumatology, the authors state:
“To our knowledge, there is currently no evidence identifying risk factors of poor outcome with COVID-19 that are specific to rheumatic disease … risk factors of poor outcome with COVID-19 include older age and select comorbidity such as chronic lung disease, hypertension, cardiovascular disease (CVD), chronic kidney disease (CKD), obesity and diabetes mellitus, conditions frequently overrepresented in patients with rheumatic disease.”
A recent case series published in the New England Journal of Medicine found that compared to the general population, people with autoimmune diseases (psoriasis, rheumatoid arthritis, psoriatic arthritis, and inflammatory bowel disease) had a lower rate of hospitalization. The patients were also more apt to be hospitalized if they had co-occurring high blood pressure, diabetes, or chronic obstructive pulmonary disease (COPD). What’s more, the researchers determined that “baseline use of biologics [in people with autoimmune disease] is not associated with worse COVID-19 findings.” Read more here about the preliminary research.
In other words, based on what is known right now, age and comorbidities seem to be bigger influences on poor outcomes from COVID-19 than having an inflammatory condition like RA alone.
If you have RA plus such comorbidities, you may be more susceptible to complications if you were to contract COVID-19. This isn’t meant to scare you, but to urge you (and, importantly, those around you) to continue to practice social distancing and maintain hygiene measures, even as economies begin to reopen in many U.S. states.
“The problem is that we just don’t know,” says Dr. Domingues. “This is a new pandemic and we’re continuing to learn and it’s going to take two to three years to have a full understanding of this virus.”
Rheumatologists and patients are working to find more answers. The good news is that “how the risk of COVID plays out in patients with rheumatic disease is being studied now and data is actively being collected on patients with these diseases,” says Lenore Brancato, MD, clinical assistant professor in the division of rheumatology at NYU Langone Health in New York City.
In fact, it may be reassuring for you to know that an international group of doctors and researchers is currently gathering data on rheumatology patients to understand how their disease, medications, and other factors influence their outcomes with COVID-19. The research registry is called the COVID-19 Rheumatology Alliance. Researchers are tweeting findings and observations as data comes in, so you may want to follow the group on Twitter to stay informed.
RA and COVID-19 Symptoms
“When you are immunosuppressed, you might not develop [COVID] symptoms the same way as the general public,” says Shailendra Singh, MD, FACP, Rheumatology Medical Director at White River Medical Center in Batesville, Arkansas.
For example, many people with RA tend to not develop fevers in general because of the medications they take or, on the other hand, may have a consistent low-grade fever as part of their regular disease activity. This is why it is crucial to pay attention to what is normal (and what is not) for you and your RA. You need to let your rheumatologist know if you suddenly feel different or more tired than usual.
However, more data is needed before rheumatologists can say for sure whether people with rheumatoid arthritis or other forms of inflammatory arthritis have different COVID-19 symptoms than people without autoimmune conditions.
Read more here about what to know specifically about common COVID-19 symptoms such as fever, cough/shortness of breath, and fatigue.
Do Not Stop Taking Your Medications on Your Own
One of the most common questions we are fielding from rheumatology patients is about whether to stop taking their disease-modifying medications. But the guidelines here are still generally the same for RA patients as they’ve been since the beginning of the coronavirus pandemic:
If you are otherwise healthy, you should not stop taking your RA medications.
For example, for patients with stable RA who do not have an infection or coronavirus exposure, the ACR’s new guidance suggest that the following medications may be continued:
- Hydroxychloroquine or chloroquine (HCQ/CQ)
- Sulfasalazine (SSZ), methotrexate (MTX), leflunomide (LEF)
- Immunosuppressants (e.g., tacrolimus, cyclosporine, mycophenolate mofetil, azathioprine)
- Janus kinase (JAK) inhibitors
- Non-steroidal anti-inflammatory drugs (NSAIDs)
Regarding glucocorticoids such as prednisone, the ACR guidance says that they should be used at the lowest dose possible to control RA — and should not be abruptly stopped, regardless of exposure or COVID-19 infection status. Read more here about prednisone and coronavirus.
If you do become sick with an infection, then the decision about whether to stop certain immunosuppressing medications should be made with your health care provider — never alone. The ACR guidance generally suggests that if someone with RA has a confirmed or suspected COVID-19 infection, then:
- Anti-malarial therapies (HCQ/CQ) may be continued
- Sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics, and JAK inhibitors should be stopped or held
- For patients with severe respiratory symptoms, NSAIDs should be stopped
- In select circumstances, as part of a shared decision-making process, IL-6 inhibitors may be continued
“The best strategy is to work with your rheumatologist to make a decision,” says Dr. Domingues.
Read more here about sick-day planning for the coronavirus pandemic.
What to Know About Getting Biologic Infusions
Patients who get biologic infusions for RA may be concerned about continuing to receive these treatments, as they require going into a doctor’s office, outpatient clinic, or hospital.
If you have concerns, it’s a good idea to call your doctor’s office ahead of time to ask about what to expect in terms of new procedures. Examples of procedural changes for infusions include:
- Screen for coronavirus symptoms among office staff and patients
- Ensure social distancing in waiting rooms or eliminate waiting rooms altogether (ask patients to wait outside the facility, such as in their car)
- Limit the number of patients and staff in the office at one time
- Use thorough disinfecting measures, including cleaning all equipment and high-touch surfaces between each patient use
- Use personal protective equipment (PPE)
Find out more here about navigating biologic infusions during the pandemic.
Know That Most Medication Shortages Should Be Short-Lived
With rheumatoid arthritis drugs like hydroxychloroquine (Plaquenil) being used as treatment for COVID-19, shortages and limited access have been reported by various rheumatology patients across the country. Read some of their stories here.
Many RA patients (along with lupus patients and others who take hydroxychloroquine daily to manage rheumatologic diseases and prevent complications) have been worried about getting their medications and experiencing flares if they can’t.
Production of hydroxychloroquine has been ramping up while newer research has cast doubt on its widespread use for COVID-19 treatment.
A new study of nearly 1,400 patients with moderate to severe COVID-19 at New York–Presbyterian Hospital (NYP)–Columbia University Irving Medical Center (CUIMC), found that patients who received hydroxycholoroquine fared no better than patients who did not receive the drug.
The study, published in the New England Journal of Medicine, says that, based on its findings, “hospitalized patients with COVID-19 illness should not be routinely treated with hydroxychloroquine.”
Importantly, know that no one should be taking hydroxychloroquine if it isn’t prescribed for you — and, as an RA patient, you can help educate others about this.
“There is no evidence for anyone to be taking Plaquenil to prevent exposure to COVID-19,” says Dr. Domingues.
If you’re concerned about your hydroxychloroquine access, call your rheumatologist, who may work with you to adjust your dosage until your prescription can be filled. While cutting your dosage — say, to one pill a day from two — is not ideal and no rheumatologist wants patients to have to do that, some are suggesting it temporarily to make patients’ supplies last longer.
Do not make such dosage changes without guidance from your doctor.
If you are an RA patient experiencing issues accessing your hydroxychloroquine prescription, share your story with us here.
How to Manage Your RA Symptoms During the Coronavirus Pandemic
As a patient with RA, your most important health goals right now are:
- Avoid getting COVID-19
- Stay on top of your RA to avoid flares or complications
It is important to make sure your RA is well-controlled. Arthritis that is flaring means that your immune system may be less able to fight off infection.
Here’s how our rheumatologists are advising RA patients to stay healthy (in both mind and body) during the COVID-19 pandemic.
Follow public health guidance
It’s important to continue to follow recommendations from the U.S. Centers for Disease Control and Prevention for people who may be at a higher risk of complications, even as economies begin to reopen. This includes:
- Stay home as much as possible
- Follow social distancing when near others
- Wear a face covering in public
- Wash hands thoroughly and often
- Disinfect frequently touched surfaces
Take advantage of telehealth
Most rheumatologists are offering telehealth visits as an alternative to in-person visits — and they’re encouraging patients to reach out with any questions and concerns between visits, too. “Telehealth offers a new option to stay connected to physician support,” says Dr. Brancato. “Hearing and seeing [your physician] can be reassuring.”
Not sure how remote care works? The American College of Rheumatology put together some guidance for patients on how to navigate telehealth and you can read more here about how some practices are implementing telehealth.
Do not fear in-person doctor visits
If your doctor wants you to come for an in-person visit, know that offices have dramatically changed their environments and systems to ensure safety for patients (as well as for their doctors, nurses, and staff). Ask your doctor in advance about what to expect in terms of new procedures, which should help you feel more reassured.
Lean on loved ones
Although many places have measures in place to limit customers, grocery stores can still be crowded and are best avoided if you are at a higher risk for COVID-19 complications. If possible, ask a family member or close friend to pick up essentials for you, says Dr. Domingues, or try to book a grocery delivery service or curbside pick-up.
Pain and inflammation can make it hard to get quality, restorative sleep — and when you add anxiety over the coronavirus, it can feel downright impossible to fall or stay asleep all night. Yet sleep is crucial for keeping pain and fatigue at bay and preventing depression. Do your best to keep a consistent sleep schedule (try to avoid long daytime naps) and exercise during the day so your body is tired at night, says Dr. Singh.
Read more here about managing painsomnia during the age of COVID-19.
There has never been a better time to quit smoking. Not only does smoking contribute to increased joint pain and joint damage (as well as deadly cancer and heart disease), it also increases your risk of transmission of the virus from hand to mouth (as you bring the cigarette to your lips) and also causes lung disease and COPD, which reduces your lung capacity and decreases your body’s ability to fight COVID-19 infection.
Exercise is a mainstay of managing the pain, stiffness, and fatigue of rheumatoid arthritis. It is also a crucial way to cope with the anxiety of coronavirus. Avoid being sedentary. Some daily physical activity, whether a very gentle yoga routine or a short walk outside around your block, is good for your physical health and mental health for so many reasons.
One overlooked one is the simple fact that daily exercise helps you build a routine, which is very important in creating comfort and coping right now, says clinical psychologist Laurie Ferguson, PhD.
Check out these additional mental health resources from clinical psychologist Laurie Ferguson, PhD.
Make your diet as anti-inflammatory as possible
Dr. Singh is telling his patients to stick to a Mediterranean diet pattern to possibly help reduce inflammation and boost mood. This means loading up on fruits and vegetables, beans, nuts, white meat, fish, and whole grains, and avoiding red meat and high-sugar, processed food. Of course, this is easier said than done when fresh, healthy food may be hard to come by or too expensive.
Check out these anti-inflammatory meals made with mostly shelf-stable ingredients for inspiration.
Overwhelming feelings of worry and dread are common among people with RA — and these feelings likely feel supersized right now. Dr. Brancato advises patients to appeal to their senses to stay grounded. “Use essential oils at pulse points, go outdoors to walk, take baths with Epsom salt or bath oils to soothe the mind and body, and listen to a favorite song, symphony, or playlist.” She also recommends downloading a mindfulness app, like Headspace, 10 Percent Happier, or Calm.
Not only can journaling help you label your feelings and emotions, but it can enable you identify the “good” in each day or your “win moment” for the past 24 hours, says Dr. Brancato. “Even though we are in uncertain times, we can develop a greater appreciation of our lives and our humanity. This can keep us together, even when we are apart.” Check out these journal prompts specifically for people living with chronic illness.
You can also use our ArthritisPower app to track your RA symptoms and disease activity and share your results with your doctor.
Get Free Coronavirus Support for Chronic Illness Patients
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ACR Updates: COVID-19. American College of Rheumatology. https://www.rheumatology.org/announcements.
ACR Infusion Guidance During COVID-19 Crisis. American College of Rheumatology. https://www.rheumatology.org/Portals/0/Files/ACR-Infusion-Guidance-COVID-19.pdf.
Geleris J, et al. Observational Study of Hydroxychloroquine in Hospitalized Patients with Covid-19. New England Journal of Medicine. May 7, 2020. doi: https://doi.org/10.1056/NEJMoa2012410.
Haberman R, et al. Covid-19 in Immune-Mediated Inflammatory Diseases — Case Series from New York. New England Journal of Medicine. April 29, 2020. doi: https://doi.org/10.1056/NEJMc2009567.
Interview with Alfred H.J. Kim, MD, PhD, assistant professor of medicine at Washington University School of Medicine and director of the Washington University Lupus Clinic
Interview with Lenore Brancato, MD, clinical assistant professor in the division of rheumatology at NYU Langone Health in New York City
Interview with Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida
Interview with Shailendra Singh, MD, FACP, rheumatology medical director at White River Medical Center in Batesville, Arkansas
Mikuls TR, et al. American College of Rheumatology Guidance for the Management of Adult Patients with Rheumatic Disease During the COVID-19 Pandemic. April 29, 2020. doi: https://doi.org/10.1002/art.41301.