Specific Autoimmune Diseases & COVID-19

The information provided herein is informational and educational only and does not constitute medical advice. It is not the intention of the American Autoimmune Related Diseases Association to provide medical advice, but rather to aid users’ understanding of their health and diagnosed disorders. Specific medical advice will not be provided, and AARDA urges you to consult with a qualified physician for diagnosis and for answers to your personal questions. In the event of any medical emergency, please call 911 or go to your nearest emergency room.

The information below is from the National Adrenal Diseases Foundation

Are those with Addison’s Disease or secondary Adrenal Insufficiency in a high-risk category?

If you have Addison’s disease or adrenal insufficiency you may be within the group of vulnerable individuals who are at an increased risk of severe illness from coronavirus (COVID-19).

Individuals with all types of Adrenal Insufficiency, both primary and secondary Adrenal Insufficiency, should exercise extra precautions, follow healthcare providers’ advice, and follow CDC recommendations for individuals at higher risk.

How should I manage my medications if I get ill in the coming weeks?

Call your healthcare provider if you have concerns or questions about your condition, medications or feel sick.

When individuals with Adrenal Insufficiency are not sick and therefore not requiring stress dosing, they should discuss with their physicians whether higher or lower doses of hydrocortisone will protect them from getting sick. They should continue to take their regular replacement dose as prescribed unless otherwise instructed by their physician.

If you do get sick, your healthcare provider may increase the dose following stress dosing guidelines; you can find these guidelines on the NADF website.

How can I keep stress levels down?

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

The National Alopecia Areata Foundation

The Centers for Disease Control and Prevention

Additional information:

Cicatricial Alopecia Research Foundation

Does having alopecia areata put me more at risk for contracting COVID-19?

According to the Centers for Disease Control and Prevention (CDC), many conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications.

Although, so far there is no evidence to suggest those with alopecia areata are at a higher risk of contracting the virus, if you are on medication that affects your immune system (for example, JAK inhibitors), you may want to be particularly cautious because of the potential for greater risk of complications if infected.

Actions to take

If you are immunocompromised, continue any recommended medications or treatments and follow the advice of your healthcare provider.

Call your healthcare provider if you have concerns about your condition or feel sick.

Why you might be at higher risk

People with a weakened immune system have reduced ability to fight infectious diseases, including viruses like COVID-19. Knowledge is limited about the virus that causes COVID-19, but based on similar viruses, there is concern that immunocompromised patients may remain infectious for longer than other COVID-19 patients.

If you think you may have symptoms of, or have been exposed to COVID-19, please refer to this link from the CDC and also ask your health provider.

How can I keep stress levels down?

With the increase of COVID-19 cases there is a corresponding increase of anxiety and stress, which is completely understandable. After all, none of us know exactly when this outbreak will peak and then begin to decrease and eventually come to an end. If you or someone you know is experiencing anxiety, we encourage you to visit Mental Health America where they have tools for self-screening and helpful resources.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from the Arthritis Foundation.

Should one stop taking the prescribed biologic/immune suppressants (Cosentyx/Sulfasalazine)?

According to the Arthritis Foundation, “We don’t know whether taking immunosuppressant drugs further increases the risk of catching COVID-19. But Michael George, MD, a rheumatologist and assistant professor of medicine and epidemiology at the University of Pennsylvania, in Philadelphiasays that in relation to viruses in general, limited data suggest some of the drugs used to treat autoimmune and inflammatory types of arthritis – biologics (for example, Remicade, Enbrel and Cimzia), JAK-inhibitors (Xeljanz, Olumiant and RINVOQ), and corticosteroids (prednisone) – may contribute to higher risk or severity of viral infection.”

Call your healthcare provider if you have concerns or questions about your condition, medications or feel sick.

What can a person with an autoimmune disorder do to avoid COVID-19 and what should that person do if they get it?

Follow CDC recommendations for individuals at higher risk:

  • Continue your medications and do not change your treatment plan without talking to your doctor.
  • Have at least a 2-week supply of prescription and non-prescription medications. Talk to your healthcare provider, insurer, and pharmacist about getting an extra supply (i.e., more than two weeks) of prescription medications, if possible, to reduce trips to the pharmacy.
  • Talk to your healthcare provider about whether your vaccinations are up to date. People older than 65 years, and those with many underlying conditions, such as those who are immunocompromised or with significant liver disease, are recommended to receive vaccinations against influenza and pneumococcal disease.
  • Do not delay getting emergency care for your underlying condition because of COVID-19. Emergency departments have contingency infection prevention plans to protect you from getting COVID-19 if you need care for your underlying condition.
  • Call your healthcare provider if you have any concerns about your underlying medical conditions or if you get sick and think that you may have COVID-19. If you need emergency help, call 911.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

Are Behcet’s patients considered to be at greater risk should they get infected with COVID-19? For patients treated with immunosuppressant medications, are there extra precautions that they should be taking?

According to the Centers for Disease Control and Prevention, many conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications.

Actions to take

If you are immunocompromised, continue any recommended medications or treatments and follow the advice of your healthcare provider.

Call your healthcare provider if you have concerns about your condition or feel sick.

Why you might be at higher risk

People with a weakened immune system have a reduced ability to fight infectious diseases, including viruses like COVID-19. Knowledge is limited about the virus that causes COVID-19, but based on similar viruses, there is concern that immunocompromised patients may remain infectious for longer than other COVID-19 patients.

Call your healthcare provider if you have concerns or questions about your condition, medications, or feel sick.

What can a person with an autoimmune disorder do to avoid COVID-19 and what should that person do if they get it?

Follow CDC recommendations for individuals at higher risk:

According to the CDC,

  • Continue your medications and do not change your treatment plan without talking to your doctor.
  • Have at least a 2-week supply of prescription and non-prescription medications. Talk to your healthcare provider, insurer, and pharmacist about getting an extra supply (i.e., more than two weeks) of prescription medications, if possible, to reduce trips to the pharmacy.
  • Talk to your healthcare provider about whether your vaccinations are up to date. People older than 65 years, and those with many underlying conditions, such as those who are immunocompromised or with significant liver disease, are recommended to receive vaccinations against influenza and pneumococcal disease.
  • Do not delay getting emergency care for your underlying condition because of COVID-19. Emergency departments have contingency infection prevention plans to protect you from getting COVID-19 if you need care for your underlying condition.
  • Call your healthcare provider if you have any concerns about your underlying medical conditions or if you get sick and think that you may have COVID-19. If you need emergency help, call 911.

For more information on Behcet’s Disease, please visit American Behcet’s Disease Association.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Beyond Celiac

Celiac Disease Foundation

Gluten Intolerance Group of North America/Resources Gluten-Free COVID-19 Pandemic

As someone with Celiac Disease, am I at increased risk of COVID-19? How can I protect myself?

According to the Celiac Disease Foundation, “To date, there have been no studies or reports suggesting patients with celiac disease are at increased risk of severe illness from COVID-19 compared to patients without celiac disease. Data is now being collected in an international adult and pediatric registry called SECURE-Celiac. We encourage all celiac patients diagnosed with COVID-19 to have their physician file a report at covidceliac.com. You can share your experiences whether you or your child have been diagnosed with COVID-19 infection.  Data from these registries will show the true impact of COVID-19 on celiac patients.”

According to the Celiac Disease Foundation Medical Advisory Board, “… celiac disease patients, in general, are not considered to be immunocompromised. A small proportion of celiac disease patients with severe malnutrition and weight loss, the rare complication of Type 2 refractory celiac disease, on immunosuppressive medications or with other serious illnesses may be at increased risk of severe illness from COVID-19 and should consult with their physicians.”

According to the Celiac Disease Foundation, “It is important to know that celiac disease is a chronic medical condition in which there appears to be an increased risk of infections with pneumococcal bacteria that cause pneumonia and herpes zoster (causing shingles). In addition, there appears to be increased risk of worse outcomes with influenza infections and an inadequate response to vaccination with hepatitis B. Still, these risks, while measurable in several studies, are small in magnitude. It is reasonable to consider that those with celiac disease, especially older individuals, may be at a small increased risk of worse outcomes with infections with this new virus.”

To protect against secondary infection of pneumonia, the Celiac Disease Foundation Medical Advisory Board strongly advises people with celiac disease, aged 15-64 years, who have not received the scheduled pneumococcal vaccination series as a child, to consider vaccination. An annual flu vaccine is also recommended. This applies to all people with celiac disease, whether they are on a gluten-free diet.

The Celiac Disease Foundation advises that since children and adults with celiac disease, like others in our community, are at risk for COVID-19 infection, careful infection control practices should be exercised including:

  • Social distancing – stay home as much as possible, avoid social gatherings of more than 10 people, and stay at least 6 feet away from others when in public
  • Frequent hand washing – wash hands with soap and hot water for at least 20 seconds or with hand sanitizer that contains at least 60% alcohol, especially after being in a public place or after blowing your nose, coughing, or sneezing
  • Cleaning and disinfecting frequently touched surfaces daily – including tables, doorknobs, light switches, countertops, handles, desks, phones, keyboards, toilets, faucets, and sinks
  • Avoiding touching of eyes, nose, and mouth with unwashed hands
  • Covering of mouth and nose with a cloth face cover when in public for anyone over the age of 2

It is also important to pay attention to your mental health and practice self-care to reduce stress and anxiety. Learn about COVID-19 and Mental Health here.

Based on available evidence, children do not appear to be at higher risk for COVID-19 than adults. Learn about COVID-19 and your Celiac Child here.

According to Beyond Celiac, “If you are taking corticosteroids and other immunosuppressant medications, you are at increased risk for coronavirus. While not typically used for celiac disease, these medications are often used to treat other autoimmune diseases.  The CDC says the data from China suggest that those with diabetes, heart disease, and lung disease are all at higher risk of getting sicker from coronavirus.   One should not infer from these finds, however, that those with celiac disease, in the absence of these comorbidities, are at higher risk for COVID-19.  You can find updated information about the coronavirus on the Beyond Celiac website.

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Celiac Special Interest Group has issued a statement on Pediatric Celiac Disease and COVID-19:

Celiac disease is not considered to be an immunocompromised state in children and is not known to be a risk factor for severe disease. Like everyone, children with celiac disease should exercise careful infection control practices, including “social distancing,” washing hands with soap and water frequently and for at least 20 seconds, and avoid touching their eyes, nose, and mouth. Patients with other medical conditions should refer to their provider for further disease specific guidance and to information provided by local health authorities.”

Would a recent accidental exposure to food containing gluten increase my susceptibility to COVID-19 as a person with celiac disease?

According to Beyond Celiac, “Acknowledging that there is no specific research data available, it follows that if celiac disease is carefully controlled and a strict gluten-free diet is in place, the immune system will have returned to a state similar to the rest of the population, and therefore the susceptibility to COVID-19 should not be different from that of the general population. If celiac disease is in its active stage, and a strict gluten-free diet is not observed (as in the case of those who are undiagnosed or those who continue to have accidental or intentional gluten exposure), the immune system is over-activated by the presence of gluten. Such over-activation of the immune system will make a person more susceptible to any viral infection, including COVID-19. Because more research is needed, we are collecting information about how COVID-19 impacts people with celiac disease through our Go Beyond Celiac database. With your feedback we can better understand the interplay between celiac disease and COVID-19 infection.”

According to the Celiac Disease Foundation Medical Advisory Board, occasional gluten exposure from cross-contact does not put a patient with celiac disease at increased risk of severe illness from COVID-19, but patients are cautioned to adhere to a strict, gluten-free diet for overall health.

What should I do if I cannot find any gluten-free essentials in my grocery store?

According to Beyond Celiac, “While there have been reported shortages of some gluten-free foods on store shelves, especially at the outset of stay-at-home orders, many brick and mortar and online stores have been unable to replenish their supplies.  If there are specific gluten-free products such as pasta or bread that you are able to find locally, blogger Andrea Tucker of Baltimore Gluten-Free has assembled a list of dozens of 100% gluten-free establishments that ship nationwide.

Fortunately, there are plenty of gluten-free foods that are readily available. Fruits and vegetables, dairy, eggs, unprocessed meats, beans, and non-gluten grains such as rice and quinoa are all naturally gluten-free. Find additional information in the Gluten-Free Food section on Beyond Celiac’s website.

According to The Celiac Disease Foundation, “We are working with our sponsors and vendors to assure a steady supply of direct-to-you and in store products. Please visit our Gluten-Free Resources for our company list and be sure to check back frequently as more are added.  Browse our Gluten-Free Meal Plans to determine which is the right fit for you.”

From the Celiac Disease Foundation, “There may be a silver lining in the COVID-19 cloud.  The pandemic might improve diagnostic rates and follow-up care for people with celiac disease. For safety, patients can now meet with doctors and dietician’s expert in celiac disease from home using telehealth. View our Telehealth Directory to schedule an appointment now.

Though there is no approved antiviral treatment for COVID-19, some over-the-counter medications may help relieve fever, body aches, and nasal congestion. Although rare, some of these medications may contain traces of gluten. Learn how to effectively evaluate the ingredients in these products.

If you must be hospitalized, reference our Healthcare Facility Guide and the Gluten-Free Diet Guide to assure that you are able to maintain a gluten-free diet in the hospital.”

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Crohn’s & Colitis Foundation

The Lancet Gastroenterology & Hepatology, Volume 5, Issue 5, 2020, Pages 426-428, ISSN 2468-1253

Potential risk factors for SARS-CoV-2 infection

  • Patients with inflammatory bowel disease (IBD) on immunosuppressive agents
  • Patients with active-stage IBD with malnutrition
  • Elderly patients with IBD
  • Patients with IBD frequently visiting a clinic/hospital
  • Patients with IBD with underlying health conditions, such as hypertension and diabetes
  • Patients with IBD who are pregnant

Will my risk reduce if I stop taking my immunosuppressive medicine?

STAY ON YOUR IBD MEDICATIONS. Inflammation due to IBD can lead to complications and damage to your intestinal tract. Your medications aim to keep this inflammation under control. Always talk to your doctor about your treatment plan if you have concerns or questions.

If you are taking a mesalamine (Asacol®, Apriso™, Canasa®, Delzicol™, Lialda™, Pentasa®, Rowasa®) or other aminosalicylates, these all may be safe depending upon your physical and medical condition and are not immune suppressant medications.

While taking these medications, you do not need to take extra precautions beyond CDC recommendations regarding proper hygiene.

If you are taking steroids (prednisone/prednisolone) for any reason, follow the CDC’s recommendations for risk reduction and talk to your healthcare provider, because steroids can suppress your immune system.

Please discuss with your healthcare provider options to best manage your steroid treatment.

Immunomodulators like thiopurines (azathioprine, 6-mercaptopurine, cyclosporine, methotrexate), and the JAK inhibitor tofacitinib (Xeljanz®) may inhibit the body’s immune response to viral infections.

Do not stop your prescription medications. If you have concerns, talk to your provider. 

Biologics/Biosimilars including certolizumab pegol (Cimzia®), adalimumab (Humira®), infliximab (Remicade®), golimumab (Simponi®), infliximab-abda (Renflexis®), infliximab-dyyb (Inflectra®), infliximab-qbtx (Xifi™), ustekinumab (Stelara®), and vedolizumab (Entyvio®) are immune suppressing drugs.

Talk to your healthcare provider before making any adjustments to these medications.

Will I still be able to have my infusion?

If your medication requires an infusion, please do not skip these appointments. It’s important to stay on your medications and go to infusion appointments as scheduled. If you have concerns about visiting an infusion center:

Talk to your doctors and discuss your concerns.

Schedule infusions at off-peak hours and discuss options with the infusion center.

Discuss home infusion options with your doctor.

Check your insurance plan to see if home infusions are an option

Should I still go to my appointment at the hospital? 

Routine testing and clinical encounters:

Many providers have moved to phone or video encounters for stable patients. You should inquire about the availability of these options to keep these appointments so you can discuss your current situation and plans for staying well through this difficult time. Your healthcare team could recommend that routine tests (such as blood work, colonoscopies, or endoscopies, imaging tests, etc.) can be safely delayed for a few months until the pandemic restrictions are loosened. If you are otherwise scheduled for routine tests, it is a good idea to call your healthcare team to learn their current process and recommendations.

However, if you are experiencing new or worsening symptoms, or making changes in your medical therapy, lab testing and other tests for diagnosis or evaluation may be important for your medical team to keep you feeling well during this time. Please contact your healthcare team’s office and seek their advice. In a medical emergency, call 911.

Ask about the timing of lab work or tests needed, the safest location to have this testing completed, and any special precautions being taken to keep you safe. Before going to any healthcare setting or public place, it is important to continue to follow precautions as recommended by the CDC.

Although your doctor may recommend holding off on routine tests for now, it is important not to forget these next steps in your care! Keep a list of appointments you need to schedule later so that you do not lose track. Remember that these routine tests help your doctor monitor your disease and overall health.

If you are experiencing a flare-up, contact your healthcare team right away and seek their advice. Your medical team may be able to evaluate your symptoms using a telemedicine visit. Often laboratory testing or imaging can be arranged without the need for you to be seen in the emergency department. However, there are times when patients experience severe symptoms that require evaluation in the ER. If your doctor suggests that you need to go to the ER, or if you are unable to contact your doctor or feel that your symptoms are urgent, call 911 or go to your nearest emergency department. Many practices are also holding urgent access office visits to reduce emergency department visits.

Most emergency departments are taking careful precautions to separate patients arriving with respiratory symptoms or possible COVID-19 from patients presenting with other problems. If you feel that your symptoms are emergent, you should notify your medical team, as they may be able to alert the emergency department prior to your arrival and provide the team with detailed information regarding your disease and your care needs.

Surgical Recommendations:

On March 15, 2020 a joint message was issued by the four professional GI societies (AASLDACGAGA, and ASGE) regarding elective, non-urgent, endoscopic procedures. Highlights of the guidance are below. Patients are encouraged to proactively discuss any endoscopic procedures scheduled with their provider to determine the best course of action.

Patients and providers should strongly consider rescheduling elective non-urgent endoscopic procedures. However, there are procedures that are higher priority and may still need to be performed (examples include cancer evaluations, prosthetic removals, evaluation of significant symptoms).

All patients should be pre-screened for high risk exposure or symptoms. This screening may include history of fever or respiratory symptoms, family members or close contacts with similar symptoms, any contact with a confirmed case of COVID-19, and recent travel to a high-risk area.

Patients on immunosuppressive drugs for IBD should continue taking their medications.  These patients should also follow CDC guidelines for at-risk groups by avoiding crowds and limiting travel.

How do I cope with the stress and anxiety of coronavirus?

For those living with IBD, stress and anxiety can be a part of everyday life, and at this time, the COVID-19 pandemic has added an additional layer of concern. It is important to validate your emotions during this uncertain time. Every person may respond differently to this situation, but it is important to stay calm, and look for ways to help you and your loved ones cope with these challenges.

Many patients with IBD may be fearful of their level of risk and exposure to the coronavirus. The best action any patient can take is to follow recommendations from their healthcare team and do their part to help limit the risk.

Once you are empowered with information and facts, you will be able to make the best decisions for your health and safety, and the safety of those around you.  Even with a plan, you may still have feelings of anxiety, stress and fear.

Here are some ways to help you cope with these feelings:

Turn off media and news for some time each day. While it is important to stay updated, having the news on all day can be overwhelming. Ensure you have time away from social media and the news so you can take time for yourself, and for your family.

Develop a plan. If your fears are around the need to prepare your family, take some time to discuss a plan with your loved ones on how to handle the need for quarantine, or supplies, etc. Once you have a plan in place, this may help you feel more at ease.

If you are unable to leave home, make sure you have a plan to have groceries, medications and other essential items delivered or dropped off. Ask a neighbor who can go outside or utilize social media and online local message boards.

Being stuck inside for prolonged times can be overwhelming and demotivating. If it helps, set up a schedule to follow. Having times set aside for specific activities may help add structure and normalcy back into your day.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

Seek a mental health professional. Contact your healthcare team to learn for mental health care recommendations. If you have a mental health provider in mind, call in advance and inquire about the ability to do a visit virtually. The Rome Foundation offers a directory of psychologists that have gastrointestinal expertise.

Begin a regular stress management practice using relaxation, mindfulness or meditation. The following apps are helpful to create your routine: Smiling Mind, Mindfulness Coach, Buddhify, Headspace, Calm, etc.

Try some coping mechanisms to help you de-stress. Whether it is cooking your favorite meal, taking a relaxing bath, or mindful breathing, there are many options you can try. These videos offer some suggestions from other IBD patients and caregivers:

Coping with IBD- Amy and Parsa

Other mental health resources from the Foundation

Connect with friends and family. There are many ways to connect with others through technology. Take time to check in with your loved ones, with video conferencing, or phone calls.

If possible, enjoy fresh air while following social distancing recommendations. If you have a backyard, take advantage of some time outdoors. Even if you can’t go outside, try to stay active. There are many online videos you can do at home to keep your body moving. Call your local gym and ask if they recommend or host any online workouts.

Find support through the Crohn’s & Colitis Foundation or other local resources. During this time of recommended social distancing, there are many virtual resources available that you can access at the convenience of your own home, including:

Crohn’s & Colitis Community Website

Power of Two program

Facebook support groups

IBD Help Center

Many state and local health departments may also offer supportive counseling or other resources for mental and emotional support. Check with your local health department to learn of any other resources that may be helpful.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Lupus and Allied Diseases Association

Lupus Foundation of America

Why does having an autoimmune disorder such as lupus increase the risk for infection by COVID 19? What additional steps should people with lupus take?

According to the Lupus Foundation of America, “Lupus is a chronic autoimmune disease — that means that your immune system is dysfunctional and attacks your healthy tissue. This can make the immune system less effective at fighting infections. Medications that suppress the immune system — which people with lupus often take — can also limit your body’s ability to respond to infections. As a result, people with lupus are less able to fight off bacteria and viruses, like COVID-19. When people with lupus do get sick their illness may also trigger a lupus flare. People with lupus may also have other conditions that put them at higher risk for serious illness from coronavirus such as diabetes, cardiovascular disease, kidney disease, and a weakened immune system.”

According to the Lupus Foundation of America, “The Centers for Disease Control and Prevention (CDC) recommends that people wear cloth face coverings when they are in public places where it is difficult to stay six feet away from other people. This includes grocery stores, pharmacies, and other spaces (indoor or outdoor) where people may encounter one another. Recent studies have shown that some people can transmit the virus before they show symptoms or even if they never show symptoms. The coronavirus can spread by being in proximity with other people who are talking, sneezing, coughing, even if those people are not showing symptoms.

A cloth face covering is different from a facemask worn by medical professionals. It will help you to be safer when you must be out in public, but it will not protect you completely. Please continue to follow the guidelines to stay at home as much as possible, wash your hands frequently, disinfect surfaces, and avoid touching your face.”

The Lupus and Allied Diseases Association also recommends special precautions for vulnerable populations:

  • Washing your hands- Wash hands frequently with soap and water, for at least 20 seconds. If you cannot wash your hands, use hand sanitizer.
  • Covering your mouth- When sneezing or coughing, use tissues and promptly dispose of them or cover your mouth with your sleeve or elbow
  • Staying home to further reduce your risk of being exposed during an outbreak.
  • Stocking up on necessary supplies, like food and medication.
  • Cleaning and disinfecting frequently touched surfaces.
  • Contacting your physician and requesting an extra supply of your medications in case you need to stay home for a while. Please remember that you should never stop taking your drugs or change your dosages without first talking to your doctor.
  • Taking everyday precautions to keep space between yourself and others (social distancing).
  • Keeping away from others who are sick, limiting close contact, and washing your hands often when in public.
  • Avoiding crowds as much as possible.
  • Avoiding travel, especially cruises and non-essential air travel.
  • Developing delivery options for necessary items through friends, family, or businesses.

I have lupus and take hydroxychloroquine. Am I protected against COVID-19?

According to the Lupus Foundation of America, “There is no evidence that taking hydroxychloroquine (Plaquenil) is effective in preventing a person from contracting the coronavirus (COVID-19). People with lupus should follow the guidance of their doctor and the safety guidelines being issued by the CDC.”

I take hydroxychloroquine for my lupus. Will my prescription be put in danger of not being filled?

The Lupus Foundation of America refers to the Food and Drug Administration’s posted notice of a shortage of hydroxychloroquine.  Unfortunately, people with lupus are finding it difficult to fill prescriptions for this drug. At this time, it is not possible to predict the full scope and duration of the shortage or the long-term impact the coronavirus pandemic will have on the supply of hydroxychloroquine. The Lupus Foundation of America is actively working to address the supply issue and will report to constituents through the organization’s website as more information becomes available. If you are having trouble filling your prescription, the Lupus Foundation of America has some strategies that may be helpful.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

American College of Rheumatology

Arthritis Foundation

Are those with autoimmune diseases more susceptible to COVID-19?

According to the Arthritis Foundation, “…in general, people with autoimmune or inflammatory arthritis who have high disease activity seem to have an increased risk of infections due to greater immune dysregulation.

For COVID-19 and seasonal flu, we do know that older adults and those with pre-existing health problems – especially cardiovascular disease, diabetes and high blood pressure – and those who have been hospitalized before with infections are most at risk.

The experts emphasize that one of the main concerns for people with autoimmune disease who contract seasonal flu or COVID-19 is secondary bacterial infection, or complications, that may follow the original viral infection.”

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

Does Humira and Imuran medications increase risks for COVID-19?

According to the Arthritis Foundation, “… that in relation to viruses in general, limited data suggest some of the drugs used to treat autoimmune and inflammatory types of arthritis – biologics (for example, Remicade, Enbrel and Cimzia), JAK-inhibitors (Xeljanz, Olumiant and RINVOQ), and corticosteroids (prednisone) – may contribute to higher risk or severity of viral infection…it’s important if you are taking these medications to contact your doctor right away if you think you’ve been exposed or are experiencing flu-like symptoms. Be sure to state that you are taking immune-suppressing drugs.”

For those taking Plaquenil daily, should we anticipate shortages?

According to the American College of Rheumatology,” Many rheumatology patients have been unable to fill their prescriptions for hydroxychloroquine. Professionals around the world are working day and night to ensure an adequate supply of hydroxychloroquine for all patients, including those with rheumatologic conditions. Companies that supply hydroxychloroquine have indicated that they are ramping up production of this drug to help mitigate shortages.

Many rheumatology patients are able to reduce their dose of hydroxychloroquine, or even go off the drug completely, for some time without suffering a flare.”

Patients should not stop or change the dosage of their medication without calling their doctors.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from the National Multiple Sclerosis Society.

I have Multiple Sclerosis (MS).  Am I at greater risk of getting COVID-19?

According to the National Multiple Sclerosis Foundation,

“MS itself does not increase the risk of getting COVID-19. Sometimes, the body’s response to infections, including COVID-19, may cause a temporary worsening of MS symptoms. Typically, these symptoms settle down once the infection clears up. If you are experiencing new MS symptoms or have any concerns about any of your MS symptoms, please contact your MS healthcare provider.”

Should I discontinue a cell depleting DMT during the pandemic?

According to the National Multiple Sclerosis Foundation, “People with MS have asked for guidance on the use of disease modifying therapies (DMTs) during the COVID-19 pandemic. DMT decision making varies significantly from country to country, ranging from highly provider-directed to a collaborative decision-making model.

The National MS Society’s National Medical Advisory Committee believes DMT decisions should be individualized and made collaboratively between the person with MS and his/her healthcare provider. Based on their expert advice, the Society recommends:

  • People with MS should follow CDC guidelines and additional recommendations for people at risk for serious illnesses from COVID-19. • People with MS should continue DMTs and discuss specific risks with their MS healthcare provider prior to stopping a DMT.”

Are there are any special precautions I should take?

To reduce your risk of getting sick with COVID-19, the CDC recommends the following:

  • Continue your medications and do not change your treatment plan without talking to your doctor.
  • Have at least a 2-week supply of prescription and non-prescription medications. Talk to your healthcare provider, insurer, and pharmacist about getting an extra supply (i.e., more than two weeks) of prescription medications, if possible, to reduce trips to the pharmacy.
  • Talk to your healthcare provider about whether your vaccinations are up to date. People older than 65 years, and those with many underlying conditions, such as those who are immunocompromised or with significant liver disease, are recommended to receive vaccinations against influenza and pneumococcal disease.
  • Do not delay getting emergency care for your underlying condition because of COVID-19. Emergency departments have contingency infection prevention plans to protect you from getting COVID-19 if you need care for your underlying condition.
  • Call your healthcare provider if you have any concerns about your underlying medical conditions or if you get sick and think that you may have COVID-19. If you need emergency help, call 911.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from the Myasthenia Gravis Foundation of America.

How concerned should we be for those of us taking immunosuppressants daily?

According to the Myasthenia Gravis Foundation of America, “People who are immunocompromised, such as people receiving immunosuppressant treatments for Myasthenia Gravis, are more susceptible to acquire and develop severe cases of COVID-19. Coronavirus primarily spreads from person to person via droplets breathed out, coughed out or sneezed out and by contaminated surfaces. The best way to avoid contracting COVID-19 is to avoid large collections of people who are in proximity.”

In addition, the Myasthenia Gravis Foundation also recommends the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) as providing unbiased information.

What is the best way to communicate with medical staff who are not familiar with myasthenia gravis?

According to the Myasthenia Gravis Foundation of America, “The International MG/ COVID Working Group developed comprehensive guidance, released March 23, around COVID-19 for people with myasthenia gravis and Lambert-Eaton Myasthenic Syndrome (LEMS).” The full guidance is available here.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

The Myositis Association

The Centers for Disease Control and Prevention (CDC)

The International Society of Systemic Auto-Inflammatory Diseases (ISSAID)

As I in a high-risk category?

According to the CDC, “Many conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications.  People with a weakened immune system have reduced ability to fight infectious diseases, including viruses like COVID-19. Knowledge is limited about the virus that causes COVID-19, but based on similar viruses, there is concern that immunocompromised patients may remain infectious for longer than other COVID-19 patients.”

The CDC recommends that if you are immunocompromised:

  • Continue any recommended medications or treatments and follow the advice of your healthcare provider.
  • Call your healthcare provider if you have concerns about your condition or feel sick.

Should I stop taking my medications?

According to the ISSAID, “At the moment for all patients with Autoinflammatory diseases on medication, we recommend to continue all therapies as usual.  Don’t stop your medications including colchicine and biologics, without consulting your doctor. This may cause a flare of your autoinflammatory disease.  If you are on corticosteroid therapy – consult your doctor regarding possible dose adjustment.”

Should I keep my clinic appointments?

According to the ISSAID, “ In the event that you have a routine visit consider to ask your primary care physician, or referral doctor  if this is essential, or can be safely delayed, or if it can be performed by telephone or some other remote device. This facility may vary in availability across different health care settings.”

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

The International Pemphigus and Pemphigoid Foundation

The Centers for Disease Control and Prevention (CDC)

Does having an autoimmune disease like pemphigus make you more susceptible to the coronavirus?

According to the CDC, “Certain conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications. People with a weakened immune system have reduced ability to fight infectious diseases, including viruses like COVID-19. Knowledge is limited about the virus that causes COVID-19, but based on similar viruses, there is concern that immunocompromised patients may remain infectious for longer than other COVID-19 patients.”

Should I discontinue taking Rituxan to reduce my risk of getting sick with COVID-19?

The CDC advises continuing any recommended medications or treatments and follow the advice of your healthcare provider.  Call your healthcare provider if you have concerns about your condition or feel sick.

Do I need to take any different precautions than the general public?

To reduce your risk of getting sick with COVID-19, the CDC recommends the following:

  • Continue your medications and do not change your treatment plan without talking to your doctor.
  • Have at least a 2-week supply of prescription and non-prescription medications. Talk to your healthcare provider, insurer, and pharmacist about getting an extra supply (i.e., more than two weeks) of prescription medications, if possible, to reduce trips to the pharmacy.
  • Talk to your healthcare provider about whether your vaccinations are up to date. People older than 65 years, and those with many underlying conditions, such as those who are immunocompromised or with significant liver disease, are recommended to receive vaccinations against influenza and pneumococcal disease.
  • Do not delay getting emergency care for your underlying condition because of COVID-19. Emergency departments have contingency infection prevention plans to protect you from getting COVID-19 if you need care for your underlying condition.
  • Call your healthcare provider if you have any concerns about your underlying medical conditions or if you get sick and think that you may have COVID-19. If you need emergency help, call 911.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from the National Psoriasis Foundation.

I have psoriatic arthritis and I am taking Humira.  Am I at greater risk for contracting COVID-19?  Should I continue taking Humira?

According to the National Psoriasis Foundation (NPF), “Although psoriasis and psoriatic arthritis are immune-mediated diseases, if an individual is not on an immunosuppressive medication or have other comorbid diseases, there may be minimal additional risk of contracting COVID-19 above the rest of the population.  Patients with severe disease, those on potentially immunosuppressive therapies and/or those presenting with comorbid conditions may be at greater risk of infection.

Currently, the NPF Medical Board does not recommend that all patients stop biologic therapy.  It is recommended that:

  • Individuals should stop a biologic if they have COVID-19 infection
  • Individuals in high risk groups should have a conversation with their health care provider about whether it is recommended to continue or alter therapy

Factors health care providers should consider in all management decisions in consult with the patient:

  • The specific treatment/biologic being used
  • The age, disease characteristics and possible underlying medical conditions of the patient
  • Patient’s specific situation and concerns

While there is not strong COVID-19-related evidence to provide specific guidelines or risk level, patients on oral immunosuppressive therapy may be at greater risk of infection.

The following are considered groups of higher risk of infection:

  • Those over the age of 60
  • Those who smoke
  • Those with chronic medical conditions like lung disease, heart disease, diabetes or cancer

The decision to stop a biologic or oral systemic therapy is an individual decision that should be made in conjunction with a health care provider.”

What precautions should I be taking, especially if a household member is still working outside of the home?

According to the National Psoriasis Foundation:

  • Pediatric and adult patients with psoriasis or psoriatic arthritis are encouraged to follow CDC, WHO, and federal/local guidelines and practices to protect themselves and others.
  • If a patient or family member gets sick and suspects COVID-19 infection, please stay home and telephone your health care provider immediately.
  • Patients with COVID-19 infection should be under the care of a health care provider and should let their provider know that they are taking a biologic.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Relapsing Polychondritis Foundation

Centers for Disease Control and Prevention

Is the autoimmune community at higher risk?

According to the Centers for Disease Control and Prevention, “COVID-19 is a new disease and there is limited information regarding risk factors for severe illness. Based on currently available information and clinical expertise, older adults and people of any age who have serious underlying medical conditions might be at higher risk for severe illness from COVID-19.

Many conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications.

People with a weakened immune system have reduced ability to fight infectious diseases, including viruses like COVID-19. Knowledge is limited about the virus that causes COVID-19, but based on similar viruses, there is concern that immunocompromised patients may remain infectious for longer than other COVID-19 patients.”

Should I continue my immunosuppressants?

The CDC advises immunocompromised patients to “… continue any recommended medications or treatments and follow the advice of your healthcare provider.”

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Arthritis Foundation

International Foundation for Autoimmune and Autoinflammatory Arthritis

Am I at risk of catching COVID-19 since I have rheumatoid arthritis?

According to the Arthritis Foundation, “We do not know yet about this virus, says Kevin Winthrop, MD, a specialist in infectious disease epidemiology at OHSU School of Medicine in Portland, Oregon. However, in general, people with autoimmune or inflammatory arthritis who have high disease activity seem to have an increased risk of infections due to greater immune dysregulation.

For COVID-19 and seasonal flu, we do know that older adults and those with pre-existing health problems – especially cardiovascular disease, diabetes and high blood pressure – and those who have been hospitalized before with infections are most at risk.

The experts emphasize that one of the main concerns for people with autoimmune disease who contract seasonal flu or COVID-19 is secondary bacterial infection, or complications, that may follow the original viral infection.”

Should I continue care at an infusion center?

The Arthritis Foundation has recommendations for lowering the risk of exposure and infection while maintaining an arthritis treatment regimen.

Am I at extra risk because I take an immunosuppressant?

According to the Arthritis Foundation, “We don’t know whether taking immunosuppressant drugs further increases the risk of catching COVID-19. But Michael George, MD, a rheumatologist and assistant professor of medicine and epidemiology at the University of Pennsylvania, in Philadelphiasays that in relation to viruses in general, limited data suggest some of the drugs used to treat autoimmune and inflammatory types of arthritis – biologics (for example, Remicade, Enbrel and Cimzia), JAK-inhibitors (Xeljanz, Olumiant and RINVOQ), and corticosteroids (prednisone) – may contribute to higher risk or severity of viral infection.

The concern with immune suppression is that the virus could replicate more freely and cause more severe or extensive disease, says Dr. Winthrop. For this reason, it is important if you are taking these medications to contact your doctor right away if you think you have been exposed or are experiencing flu-like symptoms.  Be sure to state that you are taking immune-suppressing drugs.”

Are there any special precautions that I should take?

According to the Arthritis Foundation, “Although investigations are underway in numerous countries to find out whether people who are immunosuppressed as a result of their disease or medications to treat it are at higher risk, not enough information is available yet to say for sure. People with autoimmune conditions – as well as others in their households – should be especially compliant with CDC recommendations: frequent hand washing, wearing masks in public and social distancing. People who have lung disease (such as those with RA-related lung disease) are thought to be more vulnerable.

Most people should continue their immunosuppressant medications if their disease is well controlled and they do not have any symptoms of COVID-19 or other respiratory illness. Depending on a patient’s other medical conditions, medications and exposure risk, their doctor may suggest delaying their infusions or lab tests.

If you do have symptoms of COVID-19, such as a dry cough or difficulty breathing, call your doctor right away – he may want you to stop certain medications.

It is also important that patients with autoimmune conditions maintain their overall health, which includes staying physically active, eating and sleeping well, and managing stress. Online classes, workshops and apps may help.”  The Arthritis Foundation recommends practicing healthy habits daily to help maintain your health and control arthritis symptoms.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from the Scleroderma Foundation.

Am I at greater risk of contracting COVID-19?  Should I stop my immunosuppressants?

According to the Scleroderma Foundation, “Having scleroderma, especially if your lungs have been involved, may increase your risk for developing a more severe form of the COVID-19 illness. Taking certain immunosuppressive medications (medicines like CellCept, Rituxan, and others) may also increase the severity of COVID-19 if you do end up catching it. Methotrexate is believed to increase risk only slightly, and hydroxychloroquine (Plaquenil) is not believed to increase the risk at all.

  • There is currently no evidence to indicate that you should stop your scleroderma medication unless you develop a fever or other symptoms that make you think you may be infected.
  • You should speak with your rheumatologist before discontinuing your medication.”

How do I take precautions to protect myself from getting COVID-19?

According to the Scleroderma Foundation, “Coronavirus spreads primarily by contact with droplets from an infected person. However, people can be asymptomatic and still be shedding the virus. Therefore, the best ways to protect yourself and your family are:

  • Avoiding crowds and practicing “social distancing” is very important to reduce the risk of getting infected and to slow the spread of the virus in the community. If you have scleroderma, particularly with involvement of the lungs, you should avoid being in crowds (examples: movie theatres, shopping malls, travel by airline or public transit, etc.). You should maintain a distance of 6 feet or more from other persons whenever possible.
  • Wash your hands frequently with soap and water, especially before eating.
  • If soap and water are not available, the next best thing is a hand sanitizer containing at least 60% isopropyl alcohol.
  • Avoid touching your face. The number one way people spread coronavirus is by touching a surface that has been contaminated by droplets someone else coughed or sneezed out, and then transferring the virus to their own nose, mouth or eyes by touching their face.
  • Clean heavily used surfaces frequently. Heavily used surfaces include doorknobs, light switches, countertops. Clean these with disinfecting wipes designed to kill “flu” viruses, or with a cleaning product based on at least 60% isopropyl alcohol, hydrogen peroxide or bleach.
  • Wearing a regular surgical mask is recommended for immuno-compromised and immuno-suppressed individuals when outside the home to safeguard against infection. Additionally, if you develop symptoms that suggest infection, you should wear a regular surgical mask. Wearing a regular surgical mask will help to catch the droplets you produce by coughing or sneezing and, thus, reduce the odds of infecting family members or others.
  • High-Quality “N95” masks are NOT recommended for use by the general public against coronavirus. Wearing an N95 mask, if you are not familiar with how to use them or if it is the wrong size for you, can actually INCREASE YOUR RISK of contracting coronavirus, because you will be constantly adjusting it, and you adjust it by touching your face.”

If I think I have COVID-19, what should I do?

The key symptoms of COVID-19, according to the Scleroderma Foundation, include: “…fever accompanied by a cough, as well as shortness of breath.  Loss of smell or taste may also be early signs of COVID-19.  If you have these symptoms, or if your baseline cough, shortness of breath or diarrhea are getting worse, you should contact your primary care doctor or an Immediate or Urgent Care facility by telephone or messaging in order to arrange for an evaluation. You should not go to a clinical setting for an evaluation without communicating with the office first.

If you are having symptoms, you should not come in for a routinely scheduled appointment with your rheumatologist and you should not come in for any IV medication infusion appointments, as there may be other patients in the office who might be at risk of being infected. Please discuss with your rheumatologist whether you need to come in right now for your routine evaluations or whether they can be done by phone/video or in the future.”

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from the Sjogren’s Syndrome Foundation.

Am I considered immunosuppressed while suffering from Sjogren’s Syndrome?  Am I more likely to get COVID-19?

According to the Sjogren’s Syndrome Foundation, “Not all Sjögren’s patients have compromised immune systems. This specific risk factor is for those who regularly take drugs to suppress the immune system. Examples include prednisone, methylprednisolone, Imuran, azathioprine, methotrexate, leflunomide, Arava, CellCept, mycophenolate, Rituxan, cyclophosphamide.”

According to the Sjogren’s Syndrome Foundation, “…hydroxychloroquine (Plaquenil) does NOT suppress your immune system and does not increase any risk for a more serious illness from COVID-19.  However, all Sjögren’s patients should still be diligent and be tested if symptoms become present.”

If you are diagnosed with COVID-19, “…you should let your physician know that you suffer from Sjögren’s and that you may be at higher risk of complications from COVID-19.

Certain people are at a higher risk of developing serious complications from COVID-19. These include people:

  • Over the age of 60
  • Pregnant women
  • People with serious chronic medical conditions such as heart disease, lung disease, diabetes, kidney conditions, or people with compromised immune systems.”

The Sjögren’s Syndrome Foundation cautions all Sjogren’s patients “…to take extra precautions because of your chronic illness and because sound research has not been done on the level of risk for autoimmune diseases patients. In addition, the Foundation is collaborating with one registry that is working with rheumatologists to track any COVID-19 diagnoses and progression within autoimmune disease patients (Sjögren’s included). The data collected, we hope, will help us learn more about potential risk for autoimmune disease patients of contracting COVID-19.”

I take hydroxychloroquine. Am I protected against COVID-19?

The Sjogren’s Syndrome Foundation explains that “The use of Hydroxychloroquine (HCQ) has been anecdotally discussed as one of 10 drugs currently being investigated for the treatment of COVID-19. However, the CDC states that there are “no approved drugs for dealing with the disease”. In addition, there are no trials yet investigating if being on HCQ will lessen your likelihood of contracting COVID-19. Thus, without peer-reviewed science, it cannot be said whether the daily use of HCQ in Sjögren’s patients will prevent them from getting the disease or lessen their symptoms if they do contract it. The Foundation is working with rheumatologists to track any COVID-19 diagnoses and progression with autoimmune disease patients (Sjögren’s included). The data collected, we hope, will help us learn more about the potential risk of autoimmune disease patients contracting COVID-19 as well as any benefits of medications, etc.”

What is being done regarding the current shortage of Plaquinel to ensure that those fully reliant on the drug can get it!

According to the Sjogren’s Syndrome Foundation, “The Foundation has been active in addressing the shortage of Hydroxychloroquine (HCQ) for Sjögren’s patients. We immediately wrote a letter to the FDA, to which they were very responsive and ensured us that they were working on the shortage. In addition, we joined with other organizations, including the American College of Rheumatology to reach out to all state governors, insurance commissioners and boards of pharmacy to enlighten them on the shortage issue. The goal is to work towards increasing supply of HCQ, ensure no price gauging happens as well as ensure that refills for current autoimmune patients is a top priority. The Foundation also heard from the U.S. President of Novartis Pharmaceuticals, one of the makers of Plaquenil. They announced that they are increasing production and donating 130 million doses of HCQ to the COVID-19 response, to free up other supply for autoimmune disease patients. Thanks to our relationship with PhRMA (Pharmaceutical Researchers & Manufacturers of America), the Foundation is in contact with other makers of Plaquenil, to ensure they understand the urgency of the supply shortage. And finally, the Foundation has also reached out to all health insurance plans including Kaiser Permanente in California and others, that have been denying refills for the drug. This is unacceptable and the Foundation will continue to fight for our patient population.”

Should I stop taking immunosuppressant prescription medications during the COVID-19 pandemic?

The Sjögren’s Foundation “STRONGLY recommends against stopping the use of any drugs without a conversation with your physician, some drugs need explicit directions to be decreased slowly or have explicit directions in how to stop the medication. Stopping a medication without your physician’s advice could be harmful and cause damage and increased disease activity.”

What can I do to help keep myself safe?

The Sjogren’s Syndrome Foundation encourages “…all patients to consider taking all necessary precautions as outlined by the Centers for Disease Control and Prevention (CDC) to reduce your exposure. These precautions include:

  • Wash your hands often with soap and water for at least 20 seconds
  • Cover your cough/sneeze with a tissue or your elbow. Throw used tissues in trash
  • Avoid touching your eyes, nose, and mouth with unwashed hands
  • Wash hands each time before applying eye drops, dry mouth, or dry skin products
  • Avoid touching public surfaces
  • Clean and disinfect frequently touched objects and surfaces
  • Stay home when you are sick
  • Avoid people who seem visibly sick
  • Practice Social Distancing – Keep 6 feet between yourself and other people and stay home whenever possible
  • Wear a cloth face covering when outside of your home in a community

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Graves’ Disease and Thyroid Foundation

American Thyroid Foundation

Centers for Disease Control and Prevention (CDC)

Does having an autoimmune thyroid disease place me at greater risk for acquiring COVID-19?

According to the American Thyroid Foundation, “The U.S. Centers for Disease Control (CDC) advises that people who are immunocompromised are at higher-risk of severe illness from COVID-19. Immunocompromised people have a weaker immune system and have a harder time fighting infections. However, the immune system is complex, and having autoimmune thyroid disease does not mean that a person is immunocompromised or will be unable to fight off a viral infection.

Thus far, there is no indication that patients with autoimmune thyroid disease are at greater risk of getting COVID-19 or of being more severely affected should they acquire the COVID-19 infection.”

Do immunosuppressants increase my risk for COVID-19?

According to the CDC, “Many conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications.”

If you are immunocompromised, the CDC recommends that you take the following actions:

  • Continue any recommended medications or treatments and follow the advice of your healthcare provider.
  • Call your healthcare provider if you have concerns about your condition or feel sick.

What are some ways to protect myself from COVID-19?

The American Thyroid Association recommends the following:

  • Practicing Social Distancing (6 feet apart) – This is the best way to avoid being exposed to, or spreading, this virus.
  • Cleaning our hands often with soap or hand sanitizer.  Avoid touching our eyes, nose, and mouth.
  • Avoiding close contact with people who are sick.
  • Staying home if we are sick, except to get medical care.
  • Cleaning AND disinfecting frequently touched surfaces daily.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from:

Vasculitis Foundation

Centers for Disease Control and Prevention

Are people with autoimmune diseases at greater risk for developing COVID-19?

According to the Vasculitis Foundation, “The specific risks of COVID-19 in people with vasculitis are yet to be determined. We suspect our patients are at higher risk of infection due to immunosuppression used to manage vasculitis. So far, we do not know whether the risk differs based on the type of immune-suppressing medication someone is taking. We also do not yet have data on the clinical course of patients with vasculitis who develop infection with COVID-19.

All patients with vasculitis (especially those on treatment) should consider themselves at high risk. They should take all the recommended precautions recommended by the Center for Disease Control (CDC) to minimize exposure.”

I take Methotrexate.  Should I stop taking my medication? Am I at greater risk to contract or get sicker from COVID-19?  Should I continue infusion therapy?

According to the Vasculitis Foundation, “Please do not stop any medications before contacting your doctor. If you are concerned about your medications and the risk of infection, you should discuss this with your doctor. They can advise you on what is best for you because they know your vasculitis history. If you are on infusion medications and are scheduled for an infusion, check with your doctor whether you should proceed. While we are all concerned about the risk of this infection, we are also concerned about relapses or flares of vasculitis from stopping or lowering medications. If this occurs, you will be at risk for complications from active vasculitis, but your doctor may need to put you on more immune-suppressing medications like high-dose steroids, etc. to manage the vasculitis.”

I take hydroxychloroquine. Will I be able to continue to refill my prescription?

According to the Vasculitis Foundation, “The ​reports of the potential benefit of the drug Hydroxychloroquine (Plaquenil) for treating COVID-19 symptoms is causing access challenges for patients. ​While this drug is primarily used to treat lupus and rheumatoid arthritis, it is also used to treat certain forms of skin vasculitis. ​We are already ​getting reports of ​rheumatology patients on this medication facing issues getting access to refills. ​The American College of Rheumatology is already working on access issues for our patients. ​It should be noted that at this time there are no proven medications for COVID-19, ​and data of its potential benefit for this infection are limited. ​Also, the studies were in people with infection, not in the prevention of infection. There are several ongoing trials. ​Patients who are on hydroxychloroquine should still take appropriate precautions outlined above. We will provide ​additional information as it becomes available. If you have further questions​ or are experiencing issues with getting your medications, please ​contact your physician.”

What can I do to help keep myself and my family safe?

To reduce your risk of getting sick with COVID-19, the CDC advises the following:

  • Continue your medications and do not change your treatment plan without talking to your doctor.
  • Have at least a 2-week supply of prescription and non-prescription medications. Talk to your healthcare provider, insurer, and pharmacist about getting an extra supply (i.e., more than two weeks) of prescription medications, if possible, to reduce trips to the pharmacy.
  • Talk to your healthcare provider about whether your vaccinations are up to date. People older than 65 years, and those with many underlying conditions, such as those who are immunocompromised or with significant liver disease, are recommended to receive vaccinations against influenza and pneumococcal disease.
  • Do not delay getting emergency care for your underlying condition because of COVID-19. Emergency departments have contingency infection prevention plans to protect you from getting COVID-19 if you need care for your underlying condition.
  • Call your healthcare provider if you have any concerns about your underlying medical conditions or if you get sick and think that you may have COVID-19. If you need emergency help, call 911.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

The information below is from The Centers for Disease Control and Prevention.

Are those with autoimmune disease at an increased risk of severe illness from coronavirus (COVID-19)?

According to the Centers for Disease Control and Prevention (CDC), “Many conditions and treatments can cause a person to have a weakened immune system (immunocompromised), including cancer treatment, bone marrow or organ transplantation, immune deficiencies, HIV with a low CD4 cell count or not on HIV treatment, and prolonged use of corticosteroids and other immune weakening medications.

People with a weakened immune system have reduced ability to fight infectious diseases, including viruses like COVID-19. Knowledge is limited about the virus that causes COVID-19, but based on similar viruses, there is concern that immunocompromised patients may remain infectious for longer than other COVID-19 patients.”

The CDC recommends the following actions if you are immunocompromised:

Actions to take

  • If you are immunocompromised, continue any recommended medications or treatments and follow the advice of your healthcare provider.
  • Call your healthcare provider if you have concerns about your condition or feel sick.

Should one stop taking prescribed biologics/immunosuppressants?

Continue your medications and do not change your treatment plan without talking to your doctor.

I take hydroxychloroquine. Will my prescription be put in danger of not being filled?

The Food and Drug Administration has posted a notice of a shortage of hydroxychloroquine.  Unfortunately, people are finding it difficult to fill prescriptions for this drug. At this time, it is not possible to predict the full scope and duration of the shortage or the long-term impact the coronavirus pandemic will have on the supply of hydroxychloroquine. Patient advocacy organizations such as the Lupus Foundation of America are actively working to address the supply issue and will report to constituent’s as more information becomes available. If you are having trouble filling your prescription, the Lupus Foundation of America has some strategies that may be helpful.

I have an autoimmune disease.  What can I do to reduce my risk of getting sick with COVID-19?

According to the CDC:

  • Continue your medications and do not change your treatment plan without talking to your doctor.
  • Have at least a 2-week supply of prescription and non-prescription medications. Talk to your healthcare provider, insurer, and pharmacist about getting an extra supply (i.e., more than two weeks) of prescription medications, if possible, to reduce trips to the pharmacy.
  • Talk to your healthcare provider about whether your vaccinations are up to date. People older than 65 years, and those with many underlying conditions, such as those who are immunocompromised or with significant liver disease, are recommended to receive vaccinations against influenza and pneumococcal disease.
  • Do not delay getting emergency care for your underlying condition because of COVID-19. Emergency departments have contingency infection prevention plans to protect you from getting COVID-19 if you need care for your underlying condition.
  • Call your healthcare provider if you have any concerns about your underlying medical conditions or if you get sick and think that you may have COVID-19. If you need emergency help, call 911.

Talk to your healthcare team about any questions you have related to your risk. While patients are recommended to continue their medications, there may be other questions or concerns that you want to have addressed.  Give your healthcare provider a call to discuss your concerns.

Please visit the applicable National Coalition of Autoimmune Patient Groups websites for additional disease-specific guidelines.

Other resources include:

American Hearing Research Foundation

National Neutropenia Network

Neutropenia Support Association

The Ocular Immunology and Uveitis Foundation

Pernicious Anaemia Society

Stiff Person Support