Updated June 30, 2020
As the coronavirus (COVID-19) continues its global spread, many of you in the spondylitis community have reached out with concerns about how it may affect you. The Spondylitis Association of America has spoken with rheumatologists and researchers, and compiled data from trusted medical and news sources in order to create this report, with one goal in mind: to address the specific questions and needs of those with spondyloarthritis (SpA), including ankylosing spondylitis, and related diseases. Scientific understanding of the virus is still evolving, so we will update this report as new information comes to light.
The Centers for Disease Control and Prevention (CDC) is tracking COVID-19 cases in the U.S., including which states have reported cases and the causes of contraction.3 They are updating this web page on a daily basis. If you are planning to travel, you can also check the CDC’s website for up-to-date travel warnings.9
We begin our report by sharing our conversation with renowned researcher, rheumatologist, and long-standing member of SAA’s Medical and Scientific Advisory Board, Dr. John Reveille. Read on for crucial facts everyone living with SpA should know.
Dr. Reveille, could we begin with some background information about the coronavirus?
The coronavirus (COVID-19) epidemic has many patients very worried as it spreads rapidly around the U.S. and the world. It is more lethal than the typical seasonal flu virus, but significantly less so than other recent RNA coronavirus infections, including the severe acute respiratory syndrome coronavirus (SARS) virus or the Middle East respiratory syndrome-related coronavirus (MERS-CoV) in the early 2000’s – and MUCH less so than the Ebola virus. The data we have from China, much of which has now been published in the medical journals over the past few weeks, has informed us greatly as to what to expect.
Most people who come down with coronavirus will do well – in fact, they are best cared for at home in self-quarantine, with treatment focused on rest, not getting dehydrated, good nutrition and treatment of symptoms (cough, fever, etc). A number of antiviral medications are now being evaluated for use in the treatment of COVID-19, and you should stay in touch with your doctors to learn when these become recommended. Those who become very sick with it, especially those who begin to experience shortness of breath, should not hesitate to seek medical attention immediately.
The World Health Organization currently calculates the global mortality rate of COVID-19 at 3.4%.12 The people at highest risk for a bad outcome include the elderly, particularly those with other serious medical conditions such as severe high blood pressure, heart disease, kidney disease, diabetes, and chronic lung disease, as well as current smokers. Children, in fact, don’t appear to be at any significant risk from this virus. We also know that the rate of new infections in China is slowing down rapidly at this point, due in part perhaps to the Chinese government’s closing down of public events and encouraging people to remain at home.
Taking health precautions is not necessarily about those who are at lower risk for serious illness, but about not infecting their elderly family members, as well as those loved ones with underlying health problems, as discussed above, who are at severe risk.
Should those of us on immunosuppressants be more worried about the coronavirus than the general public?
Remember that the drugs we use for spondyloarthritis have different infectious risks. People on high doses of prednisone are at risk for a variety of infections. Those taking TNF inhibitors are at highest risk for mycobacterial infections such as tuberculosis. Those taking IL-17 inhibitors such as secukinumab (Cosentyx) or ixekizumab (Taltz) are at risk for fungal infections such as Candida, and those taking Janus Kinase (JAK) inhibitors such as tofacitinib (Xeljanz), baracitinib (Olumiant) or upadacitinib (Rinvoq) are at risk for herpes zoster (shingles) infection – a long-term complication of the chickenpox (varicella) virus. How these drugs might complicate a COVID-19 infection is currently not known.
However, be mindful of something else: People who are HLA-B27 positive demonstrate increased natural immunity toward a number of viral infections, such as HIV-1, hepatitis C and influenza, although whether this natural immunity carries over to coronavirus has not been studied. Moreover, I have run the Harris County HIV Rheumatology Clinic since 1990, which is the largest HIV outpatient facility in the U.S., and I have been using TNF blockers in HIV patients since 2002 without any complications. In fact, to date, I have treated over 25 HIV patients with TNF blockers, some for over 15 years continuously, with the only precaution being not to give them to patients with very advanced or uncontrolled disease.
Should I stop taking my biologic?
Dr. John Reveille: If you are showing signs of any active respiratory infection, you should not be taking your biologic (but talk to your doctor before stopping any medication). If you are not infected, it is probably safe to continue it unless you fall into the high risk categories mentioned above – that is, if you are elderly, have other serious conditions such as severe high blood pressure, chronic lung disease, kidney disease, or diabetes, or are a current smoker. In these cases, stopping your biologic or immunosuppressant for a while until the direction of the epidemic becomes more clear may be a consideration. This is a conversation you should be having with your rheumatologist if you fall into these categories. And please STOP SMOKING – at the very least, it is making your spondyloarthritis worse.
Dr. James Rosenbaum: A note on infusions. Continue with your usual medications and stop if you have viral symptoms. You should continue with infusions; you can explore home infusions or subcutaneous injections, which exist for some of the medications. Infusion centers are a risk only in the sense that a group of people congregate there, which can make it difficult to maintain recommended distancing. Try to be infused when the fewest patients are present.
If I do stop my biologic, how long will it take before my immunity to viruses, and immune system in general come back up to normal?
To the extent that it may or may not be affecting your viral immunity, probably not more than two weeks or so in many cases. It may take longer with some of the longer-acting TNF blockers, such as golimumab (Simponi), as well as intravenous TNF blockers, such as infliximab (Remicade, Inflectra or Renflexis), or golimumab administered intravenously (Simponi-Aria); in these cases it may be up to two months.
Is it true or false that NSAIDs (nonsteroidal anti-inflammatory drugs) such as ibuprofen can worsen COVID-19 effects? There was a controversial suggestion of this from France’s Health Ministry, though others argue there is no known evidence to suggest this link.
This is a complicated question indeed. First of all, and most importantly, the recent warning from the French health ministry was based on anecdotal case reports, not hard science, which is why there is such wide disagreement with this from the medical community. So let’s examine the rationale for this opinion.
We know from the SARS epidemic that high-dose corticosteroids were associated with a worse outcome in that specific coronavirus infection. There are no data on NSAIDs, however, nor steroid data from this [COVID-19] infection.
A small percentage of people who take NSAIDs, especially high dose NSAIDs, have a temporary worsening of their kidney function. Renal insufficiency is associated with greater susceptibility to infections – in fact I published a paper 30 years ago comparing data at hospitalization between a group of lupus patients who died from an infection versus lupus patients who did not; the level of kidney function proved the major determinant. I also received some data from dialysis units in Korea, where the COVID-19 mortality rate was much higher.
Finally, there is the animal data. Animal data frequently does not carry over to humans, but it does raise some concern. I think it is safe to say that acetaminophen is preferred over NSAIDs to reduce fevers or body aches in those with COVID-19, especially in those whose renal function is a bit reduced (which is common in older patients), and when they are to be taken by this population, especially at anything more than a minimal dose, it should be under a doctor’s supervision.
More generally, for those with SpA taking NSAIDs who do not currently have COVID-19, I’d say this: patients with high-risk factors for adverse effects of NSAIDs (such as those with certain heart problems, or kidney disease) should have discontinued or minimized NSAID use due to those risks, or never started on them. For SpA patients without these high-risk factors, who do not have COVID-19, I don’t know of any evidence to suggest that they should stop their NSAIDs. A conversation with your rheumatologist may be prudent to discuss other risk factors.
When a vaccine becomes available, will it be safe for SpA patients? If it is a live attenuated vaccine, should I avoid it if I have compromised immune function? If I’m taking a biologic, can I still get the coronavirus vaccine – and if so, when is best?
Killed vaccines are usually safe for people on biologics. Live vaccines less so and should be avoided, especially if a killed vaccine alternative is available. I know efforts are underway to develop a COVID-19 vaccine, but it will be a while before one is available.
How can a severely immunocompromised patient access a longer-lasting supply of medication such as biologics or pain medications (one month or more) so I can stay at home?
This is a conversation you should have with your physician, and may be determined by your insurance provider.
If I do contract, or suspect that I have contracted, the coronavirus, what should I do?
The first thing you should do is to call your doctor and find out how to get tested. The COVID-19 testing kits are becoming available and are being distributed more rapidly with each passing day.
If infected, how long is the duration of the illness?
Because so many of the Chinese patients “sheltered in place” at home, we don’t know this. We do know that those who were sick enough to need to be hospitalized were in the hospital for an average of 12 days.
What is the potential for zinc lozenges and other cold remedies to help slow down or reduce the effects of the virus?
This is not known at this point.
Should I curtail travel during this time of uncertainty?
You should certainly avoid travel to high risk areas at this point, such as China, Korea, Iran or Italy. Those who fall into the higher risk categories mentioned above should avoid travel in general. The situation is changing in the U.S. so rapidly that it is hard to make this recommendation at this time (I was scheduled for several trips in the U.S. in the next two months, but many large conferences have been canceled at this point).
I hear that in the U.S., 45% of people having to be admitted to the ICU are young people, which is not what you reported earlier. What is going on? Has the virus mutated?
The young people who are getting very sick with this virus have the same risk factors as the older people who have worse outcomes, including heart disease, diabetes, kidney disease, and severe high blood pressure. It appears that these factors, more common in older people, are more important than aging in determining whether a patient will become severely ill. Patients with spondyloarthritis and their family members who have these complications should especially practice social distancing and frequent hand washing, and at any signs of infection (cough, fever, headache, and diarrhea) seek medical attention.
I’ve heard that certain biologics, such as tocilizumab (Actemra) and sarilumab (Kevzara) may help to limit lung damage in COVID-19. Is this true?
There are anecdotal data suggesting this. Further work is necessary here.
Most of the people who get coronavirus have minor symptoms or are even asymptomatic. Can these people infect others?
Dr. John Reveille: The short answer is that we don’t know for sure. Asymptomatic people may indeed transmit the disease. What we do know is that this disease is droplet transmitted. These droplets appear not to remain in the air at distances of more than 6 feet. People who are not coughing or sneezing are not making droplets, so it would stand to reason that they are at least less likely to transmit the disease. This does not in any way lessen the recommendation for social distancing or hand washing.
Dr. James Rosenbaum: As I am interpreting reports, asymptomatic people most definitely do transmit the disease.15 We do not know if they are less contagious, but hand washing and social distancing should be practiced as if everyone has the disease.
What if I have a severe respiratory reaction to COVID-19 and need to be intubated? I have ankylosing spondylitis with some spinal fusion. Are there any particular dangers that I, and my family, should know about? Are there special guidelines medical professionals should follow when intubating a patient with spinal fusion?
Dr. James Rosenbaum: Unfortunately, intubation (placing a tube in the airway to assist with breathing) is a special challenge if you have neck fusion as can occur in spondyloarthritis. Intubation often occurs with surgeries and many patients in an ICU need intubation to assist with breathing. During intubation, the anesthesiologist or another health care provider needs to lift up the neck with an instrument so that the airway can be visualized for placement of the needed tube. But if the neck is rigid (due to bony bridges called syndesmophytes), it is possible to damage the spinal cord during this process and that in turn can cause paralysis. The physician who performs the intubation should be warned in advance so that the intubation is performed as gently as possible.17 Some physicians might decide to insert the tube through the nose instead of the mouth. Other times the physician might try to avoid intubation altogether.
This is important not just during the COVID-19 epidemic. It is important for other emergencies such as a motor vehicle accident. Spondylitis patients with severe neck disease should either wear a MedicAlert bracelet or at a minimum, carry a card in the wallet that lists medications, allergies, doctors, and special considerations like neck fusion.
For further coverage and even more of your questions answered, please check out our follow-up interview with Dr. Reveille, “Does Having Spondyloarthritis Put You at Greater Risk For the Coronavirus?”
CDC Recommendations for Higher Risk Patients
The CDC has released updated recommendations for people at higher risk of serious illness from COVID-19. Dr. Reveille defined higher risk populations earlier in this article, and the CDC concurs that they include:
- Elderly adults
- Those with serious, chronic medical conditions (such as heart disease, lung disease, kidney disease, or diabetes)14
The CDC advises those at higher risk to do the following:
- Avoid crowds and “stay home as much as possible”
- Limit close contact with others in public
- Try to avoid touching “high-touch” surfaces in public places, and wash or disinfect hands often
- Ask your doctor about obtaining several extra weeks’ worth of medications in case you need to stay home for a prolonged period of time14
Digging Deeper: Virus Behavior, Preventive Measures, and More – Updated April 28, 2020
The following information has been compiled from trusted sources to give you quick access to what you need to know about the coronavirus. We hope you find this primer helpful as you strive to protect your health and that of your loved ones.
What is the coronavirus and what are the symptoms of COVID-19?
This virus is part of a larger coronavirus family, all of which usually cause mild to moderate respiratory tract infections. However, sometimes a coronavirus outbreak originates from an animal source and can cause severe disease activity. COVID-19 (coronavirus disease 2019), which emerged in December 2019, is one such case.1
The disease can range in severity from patient to patient, causing a mild flu-like illness in some, and acute respiratory distress in others.4 Some people may be asymptomatic, but may still carry the disease and transmit it to others.
Symptoms may appear 2 to 14 days after exposure, and can include any combination of those listed below.18
- Shortness of breath or difficulty breathing
- Fever or chills
- Muscle or body aches
- Sore throat
- Sudden loss of taste or smell
- Nausea or vomiting
- Congestion or runny nose
How does the virus spread?
From person to person:
The coronavirus mainly spreads from person-to-person contact, according to the CDC. The virus is transmitted through tiny respiratory droplets (mucus or saliva) produced when an infected person coughs, sneezes, laughs, or talks. Close contact with an infected person increases the risk of transmission, so it is recommended to keep a distance of at least 6 feet.10
By touching contaminated surfaces:
According to the New York Times, after several people who attended a Buddhist temple in Hong Kong became sick, the city’s Center for Health Protection collected samples from the location. Restroom faucets and other surfaces tested positive for coronavirus, the agency said.6 A study of other coronaviruses found that if an infected person sneezed and a virus droplet landed on a nearby surface, the virus could remain infectious on metal, wood, glass, or plastic for between 2 hours and 9 days.7 Higher temperatures reduced the time the virus was infections, while colder temperatures prolonged its infectious state.7
What are the best ways to avoid contracting the coronavirus?
The CDC recommends good-sense tips to prevent the spread of the disease: Avoid close contact with other individuals (hold conversations from a distance of at least 6 feet), and stay home when you are sick. Cough or sneeze into a tissue, then safely discard. Avoid touching your eyes, nose, and mouth while in public places. Wear a homemade cloth facemask to prevent the spread of respiratory droplets in public.16 Clean and disinfect objects that are touched frequently (such as shopping carts and public transportation surfaces) with an alcohol-based disinfectant spray or wipe.11 Practice social distancing, especially in poorly ventilated spaces.14
Do facemasks protect against the spread of the virus? If so, which type of mask is best?
The CDC recommends that everyone – even those who appear healthy – wear a cloth facemask when leaving the house.16 Cloth facemasks are not guaranteed to shield you from infection, but they help prevent the spread of respiratory droplets from your mouth and nose to reduce the chances of transmitting the illness to others if you are infected but asymptomatic. The most effective masks for those who are sick with COVID-19 (or caring for someone who is sick) are N95 masks, which block 95% of small particles.8 The CDC has urged those who are healthy not to buy N95 masks, since stockpiling has created a critical shortage for healthcare professionals.
Does washing hands with soap and water help? Is antibacterial necessary?
Yes, washing your hands with soap and water for at least 20 seconds is a sound preventative measure, and should especially be done before eating, handling food, or touching your face. Here is a helpful guide to how to properly wash your hands.19 If you cannot wash your hands, use a hand sanitizer with a content of at least 60% alcohol.11
What else can I do to maintain wellness?
Practice self-care. Stress and anxiety, especially of a chronic nature, are known to suppress immune system function.13 Worry about the coronavirus is of course natural but compounded with the stress many living with SpA already suffer, these feelings can take a measurable toll. Do what you can to get enough rest, good nutrition, and hydration. Exercise and practice mind-body techniques for relaxation, such as meditation or mindfulness. In short, continue to pursue healthful living. What you already know will serve you when it comes to taking care of yourself during this time.
Do you have additional questions, concerns, or experiences you would like to share? Please email us at firstname.lastname@example.org to get in touch.