This article has been updated to reflect new information as of March 16, 2020.
As the COVID-19 outbreak continues to spread, chronic illness patients continue to have questions unique to their health needs — and answers aren’t always easy to find.
We started compiling questions from our communities of patients in the Global Healthy Living Foundation and CreakyJoints to bring them to medical experts for answers.
Note that the experts in this column are answering questions to the best of their current medical knowledge, and information is changing rapidly.
Please keep in mind that we cannot provide individualized medical advice. The information provided in this column is for informational purposes only and is not intended to take the place of consultation with your physician. If you have concerns about your health or treatment, please contact your physician, pharmacist, or other medical professional.
Q: How long does it take a healthy body to get up to maximum immunity if an immune-suppressing medication is stopped? — Anonymous
A: “Depending on the drug, the effects may last anywhere from a few days to months. Some biologic therapies are given once a week, once a month, or every few months. The answer would depend on the drug,” says Lee Simon, MD, a rheumatologist and research scientist who has served as Division Director of Analgesic, Anti-inflammatory, and Ophthalmologic Drug Products at the U.S. Food and Drug Administration (FDA). “The underlying problem here is that if you are prescribed immunosuppressive drugs, it is unlikely you are healthy. Since the need for immune suppression is usually due to cancer, post-transplant of an organ, or autoimmune disease, people who have these problems are at risk for more complications from COVID-19.”
In other words, you are immunocompromised because of your underlying health issues, not just because of the medications you take to treat it.
Also, keep in mind that “when a drug wears off, autoimmune disease can flare, and the disease flare can lead to an increase risk of infection — or a need for taking glucocorticoids such as prednisone, which suppress immunity — which is why European and American rheumatology societies are not currently recommending that people stop their immunosuppressive medications, but that people talk to their doctor and/or interrupt therapy in case of infection such as COVID-19,” says rheumatologist Angus Worthing, MD, a clinical assistant professor of medicine at Georgetown University Medical Center in Washington, D.C.
Q: I have rheumatoid arthritis, but I have not taken methotrexate or any other RA drug in over five years. Is my immune system at risk of infection? I thought I was only at risk of infection when on methotrexate or similar drugs? — Becky
A: “Rheumatoid arthritis is due to having an altered immune system in the first place,” says Dr. Simon. “Even if you are not any longer on drugs to control the disease, you still have an abnormal immune system. Since everyone is at risk of this infection, you are still at some risk and perhaps more due to your underlying disease.”
“RA patients are thought to have slightly impaired immune systems regardless of whether or not they are on active therapy, so you are still at increased risk,” says Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida.
Q: I am taking a high dose of anticoagulant medication apixaban daily for the next three months following a vascular stent fitting. Can this medication lower my immune response to the coronavirus? — Emma
A: “I know of no evidence that the use of a blood thinner [anticoagulant] causes immunosuppression,” says Dr. Simon. “But the reasons for placing a stent in the first place suggest you have heart disease, which makes you overall more fragile in terms of your health. Thus, you are at increased risk.”
Also, keep in mind that the U.S. Centers for Disease Control and Prevention consider anyone over the age of 60 at greater risk for complications once you are infected with coronavirus.
Q: I’m on coumadin. Does this make me high-risk? — Sonia
A: “Coumadin (warfarin) should not lower your immunity to fight infections; however, people with serious medical conditions may be at higher risk for complications from COVID-19, and one such condition related to this medication is a history of stroke,” says Dr. Worthing. “Ask your doctor if your medical condition might put you at higher risk.”
Q: I have rheumatoid arthritis and am feeling extremely vulnerable because of my immune system being so suppressed. I have decided to self-isolate and not be in the same room as my two teenage children and husband. Is this sensible or an over-the-top response? I am very anxious of the children carrying the virus, especially with schools still being open in the UK. — Clare S.
A: “These are great steps that have already been taken. It may be a long time that we need to keep isolating,” says rheumatologist Jean Liew, MD, a senior fellow at the University of Washington in Seattle. “We don’t know how long. We have to consider the toll on our mental health as well. Isolation for 14 days is tolerable for most, but when considering that 14 days is not a magic number, it becomes very difficult.”
Dr. Worthing suggests you ask your doctor for advice about how your medication, underlying RA, and the amount of COVID-19 infections in your community should guide your behavior of social distancing and hygiene. “For now, we know that if you stay three to six feet from others who have been exposed, and practice good hygiene including disinfecting surfaces, your risk of being exposed is low,” he says.
Q: I’ve read that early indications appear to show that some of the mainstay drugs for rheumatoid arthritis may be effective in the treatment of COVID-19. Is there anything to this? Maybe it’s just wishful thinking on my part. — Mark
A: This is a very active area of scientific research around the world right now. “These reports have to do with using medications that inhibit immune system proteins called cytokines, which get very elevated during overwhelming infection. This is called a cytokine storm. It is not unique to COVID-19. We use these medications in this way for people who are very sick in the hospital, usually after we have given standard therapies and they remain very ill. I am speaking from the standpoint of other illnesses with cytokine storm and not COVID-19 specifically, but the idea applies,” says Dr. Liew.
“Three RA drugs — hydroxychloroquine (Plaquenil), tocilizumab (Actemra), and sarilumab (Kevzara) — are being reported anecdotally or suggested theoretically to be helping to treat COVID-19 infections; however, randomized controlled clinical trials have not been completed,” says Dr. Worthing.
As Dr. Domingues notes, “It’s very early to say anything about. We simply don’t know.”
Do not make any changes to your current arthritis treatment plan based on what you are reading or hearing about potential medical treatments for COVID-19.
Q: Any advice for an immunocompromised nurse who works in an emergency room? — Shaunna
A: “Being immunocompromised can mean many things, and since we don’t yet know what the different kinds of immunosuppression mean for people who are exposed to the virus that causes COVID-19, your next steps depend on a lot of variables,” says Dr. Worthing. “Start by asking your doctor for advice. Stay informed about how frequently patients with COVID-19 and persons under investigation for COVID-19 are entering your workplace. Ask if your infection control staff can help you prepare now and for the next days and weeks in case things change. Right now, you should probably consider yourself to be at a higher risk with respect to COVID-19 and consider staying away from crowds, including at work and also during your commute to and from work.”
He adds, “All health care workers should be considering wearing different clothes at work, and possibly a ‘commuter outfit’ between work and home, and upon arriving home, washing face and hands and changing into home clothes.”
Q: I have an underlying condition that puts me at very high risk. I plan to follow all of the suggestions. My healthy husband thinks they do not apply to him. Shouldn’t he follow the same protocol as me in order to not contaminate our home and family? — Katie
A: Multiple experts said yes. “The risk of transmission has been shown to be very high among families, so your husband should take the same extra precautions,” says Paul Sufka, MD, a rheumatologist who practices in St. Paul, Minnesota.
“People who are not in high-risk groups can get the infection and pass it onto those who ARE in high risk groups. We must think of others, especially our friends and family whom we come in contract with regularly,” says Dr. Liew.
Remember, “the virus travels not just by coughs and sneezes but also by people touching contaminated surfaces and then not washing their hands thoroughly,” says Dr. Worthing. “People who cohabitate with someone who has a high risk need to practice social distancing and decontaminating surfaces and handwashing. These are new practices for Americans — and we need to begin practicing them now, before people get sick.”
Q: Would a pneumonia vaccine help against the coronavirus? — Josie
A: “No — pneumonia vaccines only protect against certain strains of the pneumococcal pneumonia,” says Gary Feldman, MD, a rheumatologist and medical director of Pacific Arthritis Care Center in Los Angeles. But there are other reasons to make sure you’re up to date on this vaccination.
“The pneumonia vaccine won’t help prevent people from being infected by this coronavirus, but it will help a lot right now in two ways,” says Dr. Worthing. “One, it can prevent some cases of pneumonia in people who are susceptible to it because of having weakened respiratory tracts from coronavirus infection; two, it could prevent pneumonia infections that could require intensive care unit ventilators and other resources, which will be needed to treat people suffering from COVID-19.”
Q: Since immunocompromised patients often do not show an elevated temperature if infected, and a high temperature is the primary signal of infection with coronavirus and what distinguishes it from [other] viruses, how are immunocompromised patients to know what to do if they have symptoms without a fever? — Oscar
A: “This is a potential problem that we are thinking about in the clinic. It is important to know that the main symptoms of COVID-19 are fever, cough, and shortness of breath. Other symptoms of upper respiratory infection also occur. Basically, you should take a change in your symptoms seriously and call your doctor,” says Dr. Sufka. “This part is important: To avoid potentially infecting others, at this point, do not just show up at an urgent care or emergency department unless you’re having breathing issues or other symptoms that need urgent attention. Call first.”
“Immunocompromised patients will generally have fevers with serious infections,” Dr. Feldman notes. “Fevers, though, may be suppressed by medication including NSAIDs, aspirin, and corticosteroids such as prednisone. If patients are on these medications, they will probably have the other manifestations of aching, malaise, cough, sore throat and/or shortness of breath.”
Q: Should immunosuppressed patients report to their regular hospital follow-up appointments for bloodwork, given that they will have to sit and wait among many patients who may well have the virus, or should they skip non-essential bloodwork appointments for the sake of safety? — Oscar
A: Call your doctor and ask about this, because your definition and their definition of “non-essential” might be not the same. “It’s important to continue medications and monitor for toxicity with blood tests and follow-up appointments,” notes Dr. Worthing.
Dr. Sufka says that his practice has been discussing this. “Ask your doctor if you are able to delay bloodwork. Our group has talked about allowing this for routine labs, but there might be something that is specific to you that needs to be watched.”
Dr. Liew suggests that patients in this same boat “call the clinic and ask if whether routine visits can be postponed or done over the phone. Some clinics have the ability to do telemedicine visits. Some regular bloodwork is very important, such as getting regular monitoring for blood thinners (warfarin).”
Q: Should I cancel my monthly biologic infusion? — Wes
A: “Right now it is not known whether biologics for rheumatic diseases are helpful or harmful in this pandemic,” says Dr. Worthing. In a message on its website, “the American College of Rheumatology advises not stopping medications without talking with your doctor, and that rheumatologists continue current practice for stopping biologic medications on an individual basis in case of infection,” he adds.
“Please discuss with your rheumatologist but currently we DO NOT recommend stopping your meds,” says Dr. Domingues.
For more information about this, read our article on immunosuppressant medications and sick-day planning.
Q: Are fibromyalgia patients considered in the ‘vulnerable’ group? — Josie
A: “At this time, we don’t know for sure,” says Dr. Worthing. “Since fibromyalgia is not a disorder of the immune system, it probably won’t limit a person’s ability to fight off novel coronavirus infection. Data is lacking, however.”
Dr. Liew adds that “your risk will depend on what medications you are on — do any suppress your immune system? — and what other medical conditions you might have — for example, diabetes, heart disease, a history of cancer.”
Q: If I am on immunosuppressive drugs, do I avoid grocery shopping? — Meala
A: “It’s important to avoid crowds if you’re immunosuppressed, and this includes the grocery store,” says Dr. Worthing. “If someone else can do your errands, that’s great, but at this time you can still shop during off-peak times to avoid crowds and be sure to wash hands thoroughly after being in public.”
Q: One thing I have not yet heard on any news feed is whether or not it is safe to swim in a pool. For many physically challenged people (such as rheumatoid arthritis patients) water-based exercise is the easiest and safest. And the water is filled with chlorine. Is it safe to swim in a pool that is not too crowded or heavily trafficked? — Josette
A: Experts were mixed on this because of limited information. “I think that if your area has evidence of community spread of the virus, that I would avoid until we know more,” says Dr. Sufka.
“We do not know the answer to that, but it is more important to consider being removed from others while exercising,” says Dr. Simon.
Dr. Domingues also brings up the fact that pool and gym locker rooms can be germ hot spots. Given that, plus the fact that we don’t know “how long coronavirus lives in water with chlorine, I would be slightly reluctant in doing so at this time.”
Q: What do you do when you are a household of six and everyone goes out every single day for school/work and brings everything home to you? I can’t quarantine myself from my family. — Brook
A: “This one may be a bigger social problem that requires our government officials to close schools and businesses, as they have done in other countries,” says Dr. Sufka. “What you can do: Make sure everyone in your family is practicing good hygiene. For younger children, it might make sense to have them change clothes and/or take a bath when they get home from school. If anyone in your family seems sick, do what you can to avoid them, which is going to be hard.”
Dr. Worthing adds, “Novel coronavirus is transmitted through coughs and sneezes and by contaminated surfaces like countertops, doorknobs, or other things people touch. Stay away from people who are coughing or sneezing and disinfect frequently touched household objects. Currently, routine use of facemasks is not recommended.”
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A Message from the ACR about Coronavirus Disease 2019 (COVID-19). American College of Rheumatology. https://www.rheumatology.org/announcements.
Interview with Angus Worthing, MD, a clinical assistant professor of medicine at Georgetown University Medical Center in Washington, D.C.
Interview with Gary Feldman, MD, a rheumatologist and medical director of Pacific Arthritis Care Center in Los Angeles
Interview with Jean Liew, MD, a rheumatologist and senior fellow at the University of Washington in Seattle
Interview with Lee Simon, MD, a rheumatologist and research scientist who has served as Division Director of Analgesic, Anti-inflammatory, and Ophthalmologic Drug Products at the U.S. Food and Drug Administration (FDA)
Interview with Paul Sufka, MD, a rheumatologist who practices in St. Paul, Minnesota
Interview with Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida