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Stopping Immunosuppressant Medication During an Infection? Sick-Day Planning for the Coronavirus Outbreak Now is the time to talk to your doctor about what you might do if you were to develop infection symptoms. DO NOT STOP TAKING YOUR MEDICATION WITHOUT YOUR DOCTOR'S KNOWLEDGE! 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. Keep Reading Coronavirus Facts: What You Need to Know If You Have Chronic Illness or Are Immune-Compromised Coronavirus Anxiety: Key Advice for Chronic Illness Patients from Health Psychologists ‘Stay Home as Much as Possible’: The New CDC Advice for Those at High Risk of Coronavirus Complications https://creakyjoints.org/treatment/stopping-immunosuppressing-medication-during-infection/?utm_source=CreakyJoints&utm_campaign=784b063f31-coronavirus-articles-march10&utm_medium=email&utm_term=0_2a31b3d2f0-784b063f31-232962794

Take the Right Shots for Lupus! August 15, 2019 While August is when we savor the last weeks of summer, it is also the time to look ahead and prepare for fall. In recognition of National Immunization Month, our Chief Scientific Officer Dr. Teodora Staeva provides background on vaccines and relays government recommendations for which are safe for people with lupus. “Vaccines help to develop immunity, in other words protect against disease, by imitating an infection,” notes Dr. Staeva. “Most vaccines contain small amounts of the germs (or parts of them) that cause disease but are either killed or weakened. The vaccine prompts the immune system to produce T cells and antibodies against these germs, and thus allows the body to learn how to fight these microbes in the future. However, several rounds of vaccination are often required to achieve optimal protection.” Currently there are four main types of vaccines. Live-attenuated vaccines use the weakened (attenuated) form of the virus so that it does not cause serious illness in individuals with healthy immune systems. Vaccines with live viruses are generally NOT recommended for people with lupus. Inactivated vaccines are made by killing the germ while making the vaccine. These are considered safe and effective for people with lupus. Subunit or purified antigen vaccines use only specific pieces of the germ. Thus, they give a very robust immune response targeted to key portions of the microbe. Generally, these vaccines can be used widely, including on people with weakened immune systems. Toxoid vaccines use a toxin (harmful product) made by the germ that causes a disease. They create immunity to the parts of the germ that cause a disease instead of the germ itself. That means the immune response is targeted to the toxin instead of the whole germ. “People with lupus are at greater risk for infections due to immunosuppression, so vaccines are very important,” noted Dr. Staeva. “But speak to your doctor before getting any vaccine to determine which are right for you and when.” _________________________________________________________________________ Recommendations from the U.S. Department of Health & Human Services (HHS), Office of Women’s Health: People with lupus typically can get the following vaccines that do not contain live viruses: The flu shot (not nasal spray which contains a live form of the flu virus) Pneumonia vaccine Human papillomavirus (HPV) vaccine Tetanus, diphtheria, and acellular pertussis (Td/Tdap) vaccine Vaccines with live viruses that may not be safe for people with lupus, include: Nasal spray vaccine for the flu Varicella (chickenpox) vaccine Herpes Zoster (Shingles) vaccine Measles, Mumps, Rubella (MMR) vaccine Live typhoid vaccine (oral) Sources: U.S. Department of Health & Human Services, Office of Women’s Health https://www.lupusresearch.org/take-the-right-shots-for-lupus/

Managing Infections for Lupus Patients - Highlights from Dr. Curran's Presentation On August 9, 2012, the LSI hosted an educational teleconference “Managing and Preventing Infections for Lupus Patients” presented by Dr. James Curran. The event included a presentation by Dr. Curran followed by Q&A from the callers. The article below is based on information obtained from the teleconference. The entire transcript will be available online in the next few weeks. The second leading cause of death in SLE is infection – making managing and preventing infections a top priority for lupus patients. Lupus patients are at greater risk for many reasons; most are on immunosuppressive therapy at one point or another, pathogen exposure at office visits and lupus itself causes a dysfunction of the normal immune response to name a few. Treatments may also contribute to the high infection rate. The new biologic medications (rituximab, orencia and Benlysta) can increase the risk of infection. Corticosteroids, including prednisone, increase the risk of infection. The higher the dose of corticosteroids you’re on, the longer you’re on the dose, the greater the risk of infection. The incidence of infections in lupus patients – especially life-threatening infections – appears to be highest in the first five years of the disease. One reason for this might be that in the first five years, patients are undergoing treatment that is modifying their immune response. Infections lupus patients should be mindful of include bacterial, viral and fungal. Some common threats to lupus are pneumococcal pneumonia or streptococcus pneumonia, Haemophilus influenza and staphylococcus aureus. Lupus patients have a predilection towards salmonella which in lupus patients frequently causes osteomyelitis or bone infections. Shingles is more common in lupus patients than the general public. Yeast infections are also common in lupus patients. Other non-hospitalized infections include respiratory tract infection, sinusitis, urinary tract infections and skin infections. Usually with aggressive treatment and early diagnosis, these infections do not require hospitalization. What can you do to protect yourself again getting an infection? First, non-live vaccines are recommended. That would include the flu shot (NOT the flu vaccine administered through the nasal passages), Pneumococcal vaccine every 5-10 years, a Bordetella pertussis booster, Hepatitis B (for healthcare workers) and meningococcal to name a few. If you are on a biologic, be aware that the biologic medicine may impair the normal response to a vaccine. If you have lupus, you should be vaccinated before you use any biologic and before taking major immunosuppressant medications. Plaquenil, hydroxychloroquine, decreases the risk of infections. A 2009 study showed that individuals on Plaquenil are 16 times less likely to get a major infection when taking the drug – regardless of whether or not corticosteroids are also taken. So, patients on corticosteroids and Plaquenil had fewer infections than patients on steroids alone. Other things you can do to manage infections are to be sure to get treated with antibiotics if you are sick. Be sure to use bactericidal drugs – drugs that kill the bacteria instead of freeze it. Lupus patient’s immune system needs to kill the bacteria. In conclusion, remember vaccinations are very important – avoid live viruses. Plaquenil reduces risk of infection. Limit your exposure to infection.