Sick-Day Planning for the Coronavirus Pandemic: What to Do with Immunosuppressing Medications for Inflammatory Conditions

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This has been reviewed and updated as of May 30, 2020.

As the coronavirus pandemic continues to evolve, it is important (not to mention reassuring during these high-anxiety times) to have a sick-day plan in place if you are taking medication for an inflammatory condition that can affect the immune system. This includes corticosteroids, disease-modifying antirheumatic drugs (DMARDs), biologics, or JAK inhibitors.

In addition to washing your hands, practicing other smart prevention habits, following social distancing, and wearing a cloth face mask in public, it is a good idea understand what you might do if you were to develop COVID-19 symptoms when you have an inflammatory condition such as arthritis, psoriasis, or inflammatory bowel disease.

Many CreakyJoints members have concerns about their medications and their potential effects on infection risk.

Many have asked whether they should stop taking their medications pre-emptively to “boost” their immune system. While you should always ask your doctor about your personal situation, the general answer is no. Healthy patients who do not have coronavirus infection or a known exposure should not stop taking their medication.

The Importance of Staying on Your Medication If You Are Healthy

Although you might assume that medications that modify your immune system could make you more susceptible to infections like coronavirus or complications from it, many questions remain about their impact on COVID-19 specifically. There is not yet definitive evidence whether certain medications could cause worse outcomes for patients, or, on the flip side, even possibly be protective against COVID-19 complications.

In fact, a recent case series published in the New England Journal of Medicine found 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.

What is known: When inflammatory arthritis is not well-controlled (not in remission or low disease activity) your immune system tends to focus on attacking your own body rather than outside threats (like the coronavirus).

Arthritis that is flaring means that your immune system may be less able to fight off infection.

Doctors are urging patients to stay on their medications and maintain good control over their inflammatory conditions to avoid disease flares. Stopping medications without consulting your doctor could mean more flares, pain, and potentially other organ manifestations, such as lungs, kidneys, skin, eyes, says Brett Smith, DO, a rheumatologist with Blount Memorial Physicians Group in Alcoa, Tennessee.

“Poor adherence to medication in inflammatory arthritis could also lead to increasing problems with arthritis symptoms, which could require steroids for disease control, which could increase infection risk,” says Dr. Smith.

In guidance recently issued from the American College of Rheumatology (ACR) and published in the journal Arthritis & Rheumatology, if you are otherwise healthy and do not have an infection or coronavirus exposure, 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)
• Biologics
• Janus kinase (JAK) inhibitors
• Non-steroidal anti-inflammatory drugs (NSAIDs)
• Corticosteroids (at the lowest dose possible to control rheumatic disease)

Corticosteroids and Infection Risk

You may have seen information from the CDC stating that patients with a coronavirus infection should avoid taking corticosteroids, which are commonly prescribed to people with inflammatory arthritis, “because of the potential for prolonging viral replication as observed in MERS-CoV patients, unless indicated for other reasons.”

However, this does not necessarily mean that healthy patients should stop taking corticosteroids that are part of their current treatment regimen. The ACR guidance says that, if needed as part of your treatment plan, corticosteroids should be used at the lowest dose possible. Keep in mind that these medications should not be stopped suddenly. They need to be tapered on a specific schedule.

ACR Guidance for Medication If You Have Coronavirus Infection or Known Exposure

If you have a confirmed or suspected COVID-19 infection, the ACR guidance suggests:

• 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

Decisions about whether to continue or stop medications should be made on a case-by-case basis by you and your health care provider. “Communication is key,” says Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida and CreakyJoints medical advisor. “The best strategy is to work with your rheumatologist to make a decision.”

Many patients have concerns about getting biologic infusions in person. Read more about what to expect at an infusion and how doctors’ offices are keeping patients safe.

If You Are Experiencing Signs of Coronavirus Infection

If you have possible signs of coronavirus, call your rheumatologist or primary care doctor for guidance on next steps. According to the latest information from the U.S. Centers for Disease Control and Prevention (CDC), the main symptoms of coronavirus are:

• Fever (100.4 or higher)
• Cough (dry)
• Shortness of breath or difficulty breathing
• Fatigue
• Chills
• Repeated shaking with chills
• Muscle aches
• Headache
• Sore throat
• New loss of taste or smell

These symptoms can appear two to 14 days after exposure, according the CDC.

Less common COVID-19 symptoms include:

• Other cold and flu symptoms
• Gastrointestinal symptoms (nausea, diarrhea, and loss of appetite)
• Anecdotal reports of visual changes
• Anecdotal reports of “COVID toes,” or pernio-like red bumps and lesions on toes and sometimes hands

Directions on what to do next can vary from place to place. Your provider may have you go to a hospital for testing. If they have you come in to the office, calling ahead will allow them to take steps to keep other people from getting infected or exposed.

Many patients with autoimmune and inflammatory diseases have concerns about coronavirus symptoms possibly overlapping with those of their underlying chronic conditions.

Read more about coronavirus symptoms in autoimmune and chronic illness patients.

Managing Coronavirus Symptoms

Thankfully, most cases of COVID-19 are mild to moderate and will not require hospitalization.

If your symptoms suggest you could have COVID-19 or you test positive, your rheumatologist or other health care provider will advise whether you should stop or change any medication doses. Some medications, such as corticosteroids like prednisone, cannot be stopped suddenly and must be tapered.

Your doctor can provide guidance on how to manage coronavirus symptoms. They will likely recommend:

• Rest
• Stay hydrated
• Take acetaminophen (Tylenol) for fever
• Remain isolated from others in your household (for at least 14 days)

When to Seek Urgent Medical Care

The CDC considers the following symptoms to be emergency warning signs for COVID-19 that require immediate medical attention:

• Trouble breathing
• Persistent pain or pressure in the chest
• New confusion or inability to arouse
• Bluish lips or face

(Of course, this list is not all inclusive. You should consult your medical provider for any other symptoms that are severe or concerning to you.)

Call 911 if you have a medical emergency and tell the operator that you have, or think you might have, COVID-19. If possible, put on a cloth face covering before medical help arrives.

The most important message is this: You should not stop taking any medications or adjust your dose of any medications without first talking to your doctor.

Get Free Coronavirus Support for Chronic Illness Patients

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.