People with chronic illness that affects the immune system, such as many forms of inflammatory arthritis, are understandably worried — if not downright freaking out — about the spread of this new virus. Here’s what infectious disease experts and rheumatologists want you to know.
Being immunocompromised during cold and flu season is stressful enough without having to worry about the coronavirus (COVID-19). The U.S. Centers for Disease Control and Prevention (CDC) is now urging Americans to start preparing for “when, not if” the U.S. will experience community spread, but what exactly does this mean if you have a chronic illness like inflammatory arthritis?
“I personally am feeling alarmed at this point,” CreakyJoints member Rene M. shared on Facebook. She is worried that the U.S. seems unprepared. “I’m keeping an eye on it and, in the meantime, limiting my time in crowded places, washing my hands often, not touching my face while I’m out. My next step will be wearing a mask. It feels like that is all we can do at this point.”
“Generally I avoid situations when I know people are ill, but then so many people go to work, shop, etc. when they are ill, it’s tough,” agreed Judy F. “I do have concerns. I’m not sure there is much to do other than continue to follow good hygiene, maybe stay off planes if travel isn’t necessary. It is a concern but since “the experts” don’t even seem to know what it is or what to do or can come up with a good and consistent diagnostic system or reporting, I’m not sure my doctor can shed any more light on it.”
CreakyJoints spoke with multiple rheumatologists and infectious disease experts to try to track down answers and advice that are as specific to this community as possible.
Here’s what we have learned so far. We will update this story as necessary if critical information changes.
Coronavirus Concerns for Immune-Compromised Patients
“It is certainly concerning for everyone, especially those who are immunocompromised,” says Nilanjana Bose, MD, MBA, a rheumatologist at the Rheumatology Center of Houston in Pearland, Texas.
For people with inflammatory arthritis, your immune system tends to focus on attacking your own body rather than outside threats like the coronavirus. And some of the medications used to manage these diseases also suppress the immune system, which can make patients more vulnerable to infection. “We need to exercise more caution and be more alert with these patients,” says Dr. Bose.
Yet we’re just beginning to learn about COVID-10, which is part of an extended family of viruses that include 229E (alpha coronavirus), NL63 (alpha coronavirus), OC43 (beta coronavirus) HKU1 (beta coronavirus), and MERS-CoV, SARS-CoV.
Here’s what we do know: The coronavirus outbreak, which originated in Wuhan, China in 2019, is moving its way around the world, with a total of more than 105,000 detected cases around the world so far and 3,500 deaths. According to the latest CDC data, the U.S. now has more than 400 confirmed cases across at least 28 states. There have been at least 19 deaths linked to the virus in the U.S.
Patients with inflammatory arthritis are probably more susceptible to the coronavirus and at higher risk of complications like pneumonia, but “we don’t have data available to quantify this risk at this time,” says rheumatologist Jean Liew, MD, a senior fellow at the University of Washington in Seattle. “In general, those on medications that suppress the immune system are going to be at heightened risk for infection, as well as getting more severe symptoms from infection if they do get it.”
This doesn’t mean you should panic, but you should pay attention to your local news, stay aware of your surroundings, practice prevention, and prepare for potential isolation. Here are more steps you can take to stay healthy and be ready for a potential community spread of coronavirus.
NEW INFORMATION: Stay home as much as possible
The CDC issued new guidelines on March 5, 2020 for people at higher risk of COVID-19 that encourage them to stay home as much as possible. The CDC describes this group as “older adults and people who have severe chronic medical conditions like heart, lung or kidney disease” but we consider those with inflammatory autoimmune conditions and anyone taking immune-suppressing medications in this group as well.
The CDC also recommends that if you do need to go out, try to avoid crowds and gatherings with large numbers of people.
Know the symptoms
The symptoms of COVID-19 are similar to those of influenza, says William Schaffner, MD, a professor of medicine in the division of infectious diseases at the Vanderbilt University School of Medicine in Nashville, Tennessee. These include:
Fever
Cough
Shortness of breath
Fatigue
Sometimes vomiting and diarrhea
Aches and pains
Complications like pneumonia
“Coronavirus is a respiratory illness and spread very readily through close contact,” Dr. Schaffner explains — for instance, if an infected person coughs or sneezes three to six feet away from you.
It may also be spread through an airborne route, which, according to Johns Hopkins, means “that tiny droplets remaining in the air could cause disease in others even after the ill person is no longer near.”
Experts aren’t sure if COVID-19 can be spread by touching an object or surface contaminated with the virus and then touching your mouth, nose, or eyes.
Symptoms usually appear within two to 14 days of being exposed to the virus.
While coronavirus is easy to catch, it is not found everywhere, like cold and flu viruses are.
“It’s important to listen to the news and advice of local health officials,” says Dr. Schaffner. “If there was an importation in Maine, it won’t affect people in Missouri; you need to be aware of your neck of the woods.”
The CDC recommends testing for the coronavirus in patients who:
Have fever or symptoms of lower respiratory illness (cough or shortness of breath) AND who have had close contact with someone who’s had lab-confirmed coronavirus
Have fever or symptoms of lower respiratory illness AND who have recently traveled to an area with widespread virus transmission (China, Japan, Italy, South Korea, or Iran)
Have fever with severe acute lower respiratory illness (e.g., pneumonia, respiratory distress) that requires hospitalization and who do not have an alternative possible diagnosis (such as flu)
At this time, there is no vaccine (although manufacturers are working on it) and no specific antiviral treatment for COVID-19, but medical care can help relieve and monitor symptoms.
Keep in mind that because coronavirus symptoms are very similar to flu or other respiratory infections, you shouldn’t necessarily panic if you develop them. What you should do is call your rheumatologist or primary care doctor right away to determine next steps.
“If patients experience worrisome symptoms suggestive of coronavirus — or influenza — they should see their PCP/urgent care/ED immediately,” says Dr. Bose.
Be your healthiest self
Right now the regular seasonal flu is a still a greater threat than coronavirus for patients with inflammatory arthritis, says Dr. Schaffner. And, luckily, the lifestyle habits that help your immune system to function optimally during cold and flu system are important for fending off the coronavirus, too.
You should make sure you have your annual flu vaccine as well as practice these habits:
Regular hand washing
Staying hydrated
Eating healthy
Exercising
Managing stress
Getting adequate sleep
“One of the easiest things to say and the hardest things to do is to sleep well,” says Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida. “People who are sleep-deprived are at much higher risk of contracting a virus.”
Another thing to keep in mind is to avoid taking “immune booster supplements,” says rheumatologist Doug Roberts, MD, an assistant clinical professor of medicine at the University of California Davis Medical School. “Some of these may interfere with the immunomodulating effects of your DMARDs [disease-modifying medications].”
It’s always a good idea to get your doctor’s approval for any over-the-counter supplements.
Stop the spread of germs
Hand washing (for at least 20 seconds with soap and water) is the hands-down (pun intended) winner when it comes to preventing the spread of germs. Here’s a video from the World Health Organization that shows proper hand washing techniques — it may be more involved than you think.
The CDC also advises common sense measures like avoiding touching your mouth, nose, and eyes, avoiding people who are coughing and sneezing, cleaning and disinfecting frequently touched objects and surfaces, and avoiding large crowds. In other words, “don’t be afraid to be the person on the plane with disinfecting wipes,” says Dr. Domingues.
At this time, the CDC does not recommend wearing a face mask to protect yourself from COVID-19. There is no scientific basis that they help prevent infection, says Dr. Schaffner. “The average face mask is too thin and fits too loosely around the face,” he notes, adding “though there is a small psychological benefit; you feel more comfortable and others know you have them in mind and are in this together.”
If you do choose to invest in a face mask, Dr. Domingues recommends the N95, which the FDA has cleared for use by the general public in public health medical emergencies.
Mind your meds
Unfortunately, some of the same medications that treat your condition — such as corticosteroids and disease-modifying drugs including biologics — suppress the immune system and make patients more prone to contracting infections and/or having a more severe infection, says Dr. Bose.
While our experts do not recommend stopping your medication or changing doses, it’s important to stay in contact with your rheumatologist’s office.
“Predinose at higher doses [20 mg or more] can be severely immunosuppressive but they cannot be tapered off fast,” explains Dr. Bose. “Biologics can be paused in patients who have an active infection and restarted once they have recovered.”
If you think you have symptoms of a respiratory infection like coronavirus, your doctor may recommend stopping or lowering medications that are immunosuppressive during an active infection and then resuming them once your infection has cleared.
Never make any changes to your medication regimen without first discussing them with your doctor.
“More study is essential on whether medication regimens should be adjusted [just yet],” says Dr. Roberts.
Start thinking about preparation for a worse outbreak
Again, we’re not there yet, but it’s important to start mentally preparing if there comes a time when local public authorities say we have to stay home, says Dr. Schaffner. “Think it through and give some thought about what you might do.”
Consider the following:
Do I have enough food/water?
Do I have an adequate supply of medication?
Are my labs up to date?
Can I seek medical care through a telehealth system?
Is working from home a possibility?
Can I skip events that put me in contact with large groups of people (religious services, sporting events, concerts, etc.)?
Can I postpone travel?
Do I have a plan in place with family members and/or caregivers?
The bottom line: Although the coronavirus can certainly cause added stress for patients living with inflammatory arthritis or other chronic conditions, keeping your immune system healthy, practicing regular infection prevention, and having an emergency plan in place can go a long way toward helping you stay calm and healthy.
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