If you’re living with rheumatoid arthritis (RA), you likely know that you are considered 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 immunosuppressing medications 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 epidemic.
People with rheumatoid arthritis are 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 in the midst of the coronavirus pandemic.
“The fact that we stratify [people with RA] as higher risk [for coronavirus] is to create extra awareness — not to create fear,” says Dr. Domingues.
Not only do people with RA have compromised immunity, but they may also have more comorbidities than the general population, including diabetes, heart disease, obesity, and COPD.
In fact, according to recently issued COVID-19 Clinical Guidance for Patients with Rheumatic Diseases from the American College of Rheumatology, “the risk of poor outcomes from COVID-19 appears to be related primarily to general risk factors such as age and comorbidity.”
If you have RA plus such comorbidities, you may be more susceptible to complications if you were to contract COVID-19. Again, this isn’t meant to scare you, but to urge you (and, importantly, those around you) to practice social distancing and step up hygiene measures more than ever.
“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 hoping 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.
“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’s 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.
One of the most common questions we are fielding from rheumatology patients is about whether to stop taking immunosuppressing medication preemptively. 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 guidelines suggest that the following medications may be continued:
As far as glucocorticoids go, the ACR guidelines say 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.
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 guidelines generally suggest that if someone with RA has a confirmed or suspected COVID-19 infection, then:
“The best strategy is to work with your rheumatologist to make a decision,” says Dr. Domingues.
Patients who get biologic medication infusions are particularly concerned about continuing to receive these treatments, as they require going into a doctor’s office, outpatient clinic, or hospital. If you are due for an infusion in the next couple of weeks, call your rheumatologist to talk through any concerns you have.
Know that doctors are taking necessary precautions to keep patients safe, including screening staff and patients for fever and other COVID-19 symptoms, sanitizing rooms and equipment between each patient, eliminating a single infusion suite and administering infusions to patients in individual private rooms, and limiting the numbers of patients in the waiting room — you may have to wait in your car, for example.
“When you are going for an infusion, minimize your stops,” Dr. Singh says. “Leave your home, go to your car, get the infusion, get back in your car, and go back home.”
With RA drugs like hydroxychloroquine (Plaquenil) being touted as treatment for COVID-19, shortages and limited access are being 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) are understandably worried about getting their medications and experiencing flares if they can’t.
The good news is that production of hydroxychloroquine should be ramping up. Manufacturers that make the medication, including Mylan, Novartis, and Teva, have pledged to increase production to make more tablets available. And the FDA recently approved an Abbreviated New Drug Application (ANDA) for hydroxychloroquine specifically for malaria, lupus, and rheumatoid arthritis.
“This action now enables more manufacturers to make hydroxychloroquine generically,” says Alfred H.J. Kim, MD, PhD, assistant professor of medicine at Washington University School of Medicine and director of the Washington University Lupus Clinic in St. Louis, Missouri. “This should translate into increased supply in the future.”
This increase in supply would be specifically for non-COVID-19 usage, so it should help mitigate drug shortages for RA and lupus should hydroxychloroquine continue to be widely used as a COVID-19 treatment.
If you’re worried, call your rheumatologist, who may work with you to adjust your dosage until your prescription is 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.
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 are an RA patient experiencing issues accessing your hydroxychloroquine prescription, share your story with us here.
As a patient with RA, your most important health goals right now are:
Here’s how our rheumatologists are advising RA patients to stay healthy (in both mind and body) during the COVID-19 pandemic.
Many 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 guidelines for patients on how to navigate telehealth and you can read more here about how some practices are implementing telehealth.
Although many states have measures in place to limit customers, grocery stores can still be crowded and are best avoided if you are immunosuppressed. 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.
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 RA. It is also a crucial way to cope with the anxiety of coronavirus. Don’t sit on the couch and watch upsetting media coverage all day. 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 it helps you build a routine, which is very important in creating comfort and coping right now, says clinical psychologist Laurie Ferguson, PhD.
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 on 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.
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.