DO NOT STOP ANY MEDICATIONS WITHOUT SPEAKING TO YOUR DOCTOR!!!
Now is the time to talk to your doctor about what you might do if you were to develop infection symptoms.
As the coronavirus becomes more widespread across the U.S. and the world, it will be important (not to mention reassuring during these high-anxiety times) to have a sick-day plan in place for people who are immunocompromised or who have underlying chronic illnesses that increase the risk for complications. (Plus, cold and flu season isn’t over yet — it’s been known to linger into May.)
In addition to washing your hands, practicing other smart prevention habits, staying away from crowds and public places, and getting your flu, pneumonia, and shingles vaccines (it’s not too late to get vaccinated), experts say now is the time to talk to your doctor about what you might do if you were to develop infection symptoms.
Many CreakyJoints members have been asking questions specific to the immunosuppressing medications they take to manage inflammatory arthritis and related conditions, such as disease-modifying antirheumatic drugs, injectable and infused biologic medications, and oral targeted medications such as JAK inhibitors.
The main theme: Do I stop taking these medications to help “boost” my immune system?
The general consensus among the many rheumatologists CreakyJoints has spoken with is this: Healthy patients should not preemptively stop taking medications.
According to a message about COVID-19 from the American College of Rheumatology on its website, “all patients should talk to their rheumatologist or rheumatology professional prior to discontinuing any of their medications” and “while there are no data on the influence of these medications on COVID-19, providers should follow their current practice for interrupting therapy during episodes of infection.”
If patients become sick with an infection, then a decision about whether to stop certain immunosuppressing medications is made on a case-by-case basis by you and your health care provider.
Do NOT make the decision to take a “drug holiday” alone.
“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.”
If You Are Experiencing Signs of Infection
If you have signs of a respiratory infection during the coronavirus outbreak, you should call your health care provider before visiting in person, as 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.
If you’re experiencing any of the following symptoms, call your doctor:
Fever
Congestion
Persistent cough
Diffused body aches
Profound fatigue
Cough with yellowish green sputum
Difficulty breathing, wheezing, or shortness of breath
“A simple viral infection can trigger bacterial pneumonia or even sudden deterioration of respiratory status, so it’s very important to keep vigilant,” says Dr. Domingues.
Immunosuppressants and Your Risk of Infection
Many of the medications that treat inflammation in inflammatory arthritis and autoimmune conditions can make you more susceptible to infections of all kinds — viral, fungal, bacterial. Drugs like corticosteroids, some DMARDS (disease-modifying antirheumatic drugs like methotrexate), JAK inhibitors, anti-TNF biologics, and other biologics each affect/suppress your immune system in certain ways. This can make it more likely for patients to contact infections — from the common cold to COVID-19 to tuberculosis to shingles — and make it harder to recover from an infection if you do contract one.
Combinations of these medications can also impact your chances of getting sick. According to a study in the Journal of Translational Medicine, adding biologics to a DMARD doubled the infection risk of the DMARD alone; biologics and corticosteroids increased it even further.
While you could assume that these medications might also increase your chances of catching the coronavirus or experiencing complications from it, no one knows this for sure. Research is underway and there are many more questions than answers. The American College of Rheumatology message states: “Currently, there are no specific data on [the coronavirus] in patients with rheumatologic disease or immunosuppression.”
Corticosteroids and Infection Risk
You may have seen information from the CDC stating that patients with a coronavirus infection 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. Your doctor may think that the benefits of remaining on a corticosteroid outweigh the risks of stopping it unless you develop an active infection.
Also, keep in mind that these medications should not be stopped suddenly. They need to be tapered on a specific schedule.
Why You Should Not Stop Taking Immunosuppressive Medications on Your Own
Depending on your type of inflammatory arthritis or chronic illness, 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, as well as lead to other side effects like weight gain and increased fracture risk,” says Dr. Smith.
Plus, “if you don’t tell your physician that you stopped [the medication] and come to the office with swollen joints, we’ll assume the medication is no longer working,” says Dr. Domingues.
Questions to Ask for Sick-Day Planning
As part of your sick-day planning, it’s a good idea to discuss the following with your rheumatologist:
How do my specific medications impact my immune system?
When would I (or should I not) stop taking my medications?
Would I need to start antibiotics preventively?
What should I do to treat infection symptoms — for example: rest, hydration, minimize physical activity, take an analgesic (Tylenol) or decongestant?
What steps should I take if a loved one in my home is sick?
What are signs to look for that I need urgent medical care?
Guidelines for Stopping Immunosuppressants
Coronavirus outbreak aside, it is a common practice to at least consider temporarily stopping immune-suppressing medications when patients have infections. The thinking is that doing so can help strengthen your immune system to shorten the infection and help avoid complications.
Keep in mind that because COVID-19 is a new virus, there are no proven guidelines for what to do regarding stopping immune-suppressing medications with this particular virus. That may sound unsettling, so it’s all the more reason to work with your doctor and to call with any questions or worries.
Generally speaking, rheumatologists say that the decision to stop medications during an infection is individualized for each patient.
“Whether you hold or continue your medication depends on the medication, how well the disease has been controlled, and how severe the disease was prior to starting the medication,” says Jean Liew, MD, a senior fellow at the University of Washington in Seattle. Whether or not a patient has other comorbidities, such as lung disease, kidney disease, and heart disease, may also play a role. “This is all based on your rheumatologist’s understanding of your individual risk/benefit profile.”
“I’m not currently suggesting to my patients to hold/stop their DMARDs — there is evidence that uncontrolled inflammatory disease also results in increased risk of infection,” rheumatologist Paul Sufka, MD shared during a recent #CreakyChats Twitter chat.
Dr. Domingues advises many of his patients to stop medications that are immunosuppressive during an active infection and resume them once the infection has cleared. “If they get a cold or virus, I typically recommend they hold their medication a week or so. If you are on weekly methotrexate, you would hold off a week or two, if you’re etanercept (Enbrel) or adalimumab (Humira), basically the same thing,” he says. “The idea is that you will diminish the chance that your immune system is downgraded.”
In general, medications that are given daily or every one to two weeks are easier to discontinue temporarily when someone becomes sick. Daily oral medications like JAK inhibitors, such as tofacitinib (Xeljanz) or upadacitinib (Rinvoq), have a much shorter half-life — they’re eliminated out of your system within 72 hours. Monthly injections and infusions remain in the body much longer, notes Dr. Domingues.
It’s more challenging when the medications are administered less frequently, says Dr. Smith. For example, if you take a biologic infusion once a month and get sick two weeks after taking your medication, you would be unable to hold the medication as it is already in your system. “However, if you were still sick at the time of the next dose, then you could hold that dose and resume the medication when you were no longer sick.”
As you can see, stopping immunosuppressant drugs is far from simple. The key take-home message is this:
Do not stop taking any medication without talking to your doctor
Do not stop taking any medication unless you have an active infection
If you have an active infection, do not stop taking medication unless your doctor suggests it as part of your sick-day plan.
If you’re feeling fine, what you should be doing right now is this: Follow the directions that your rheumatologist provided you when you started your medication, says Dr. Liew. “Contact your rheumatologist [or drug manufacturer] for updates and clarifications on these instructions if necessary,” she adds.
For ongoing coronavirus coverage and to be part of our community conversation about this, visit creakyjoints.org/coronavirus.
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