As part of the COVID-19 patient support program, the Global Healthy Living Foundation1 and their digital, international arthritis organization, CreakyJoints2, have been speaking to experts, reviewing peer-reviewed literature, and reading government guidance to understand what people living with chronic disease need to know about getting vaccinated. In this article, we use that knowledge to answer questions you may have about chronic illness and COVID-19 vaccination.
Living with chronic illness during the COVID-19 pandemic
We’ve been living with the COVID-19 pandemic so long that it may be hard to remember what it was like before we all learned about the three Ws:
- Wear a Mask
- Wash Your Hands
- Watch Your Distance
It’s simple advice, but even the healthiest person can find it hard to maintain their discipline and good attitude over time. When you are coping with a chronic illness, the pandemic may pose an even bigger burden and be more isolating.
Further, being more confined to our homes did not stop people from experiencing new and alarming symptoms and seeking medical care (in person or via telehealth3). Some individuals were subsequently newly diagnosed with a chronic illness (for example, diabetes, migraine, or an inflammatory disease such as rheumatoid arthritis, psoriasis, Crohn’s disease, or lupus) and started on therapy.
It can be overwhelming to get diagnosed with an illness that needs to be managed over a lifetime at any time. There is a lot to learn about treatments and monitoring for and managing symptoms. But trying to cope with the challenges of both a newly diagnosed chronic illness and the COVID-19 pandemic can feel like a double whammy.
Here’s what you need to know about managing chronic illness and COVID-19 regardless of whether you have been recently diagnosed or have been living for some time with a chronic illness.
What is the most important goal for people with chronic illness during COVID-19?
Regardless of your chronic condition, keeping it as well-controlled as possible — meaning low disease activity or remission — is the goal. When you have low activity, typically this means less pain, fatigue, or challenges completing the tasks of daily living. Good disease control translates to a reduced risk for developing serious complications, such as cardiovascular disease4. As a bonus, new research shows that a person with good disease control is at lower risk for dying from COVID-195.
In this study, 90 percent of the nearly 3,800 people evaluated who developed COVID-19 survived (back in spring and summer of 2020 even before doctors had as many resources as available in 2021).
Those who died were more likely to have risk factors that make COVID-19 more deadly such as being older, male, and living with comorbid conditions such as hypertension, heart, lung or kidney disease, and diabetes. For those with rheumatic diseases like arthritis, researchers reported that those with moderate to high disease activity were significantly more likely to die from COVID-19 than those with low disease activity.
The best way to keep your disease controlled is to stay on your medications and make sure to regularly connect with your doctors to make sure your treatment plan is on track.
Experts agree. For example, the American College of Rheumatology recommends6 that a healthy patient (one who is not suffering a flare or having high disease activity) who does not have a COVID-19 infection or a known exposure should not stop taking their disease-modifying medication. Further, if there is an exposure, patients should still remain on medication until they speak with their doctor. Making the decision to stop medication without input from a member of the health care team can impact the quality of life if symptoms emerge, and flares occur, potentially leading to disease complications.
Stay on meds, but get vaccinated!
Vaccination protects individuals and protects public health, which is why everyone over the age of 16 is eligible and encouraged to get vaccinated! (And the vaccine is in clinical trials7 to evaluate its safety and effectiveness in children8 now, as well.)
Some patients living with immunosuppressive conditions may have concerns about whether the three vaccines currently approved by the U.S. Food and Drug Administration (FDA) are safe for them, given that they already take medications that are immunomodulating.
As part of the COVID-19 patient support program, the Global Healthy Living Foundation and their digital, international arthritis organization, CreakyJoints, have been speaking to experts, reviewing peer-reviewed literature, and reading government guidance to understand what people living with chronic disease need to know about getting vaccinated. They say that “In the case of many immunomodulating medications for rheumatic diseases, the guidance suggests that patients do not stop taking medications before or after getting the vaccine. This is because there is no reason to think, based on available data, that stopping these medications would increase your body’s immune system response to the vaccine.”
This applies to:
- Hydroxychloroquine (Plaquenil)
- Low-dose glucocorticoids (ex: prednisone, daily dose < 20 mg)
- Sulfasalazine (Azulfidine)
- Leflunomide (Arava)
- Mycophenolate (CellCept)
- Azathioprine (Imuran)
- Cyclophosphamide (Cytoxan) (oral)
- TNF biologics (ex: Cimzia, Enbrel, Humira, Remicade, Simponi and Simponi Aria)
- IL-6 biologics (ex: Actemra, Kevzara)
- IL-1 biologics (ex: Kineret, Ilaris)
- IL-17 biologics (ex: Cosentyx, Taltz)
- IL-23 biologics (ex: Skyrizi, Tremfya)
- IL-12/23 biologics (ex: Stelara)
- Belimumab (Benlysta)
- Oral calcineurin inhibitors (ex: cyclosporine or tacrolimus)
Importantly, there is some debate about the use of high-dose steroids (daily doses ≥ 20 mg) and vaccination. Some doctors think that temporarily lowering the dose may be a good idea. This may vary from patient to patient, so it’s important to talk to a doctor if you have questions before or after vaccination about your medications.
Also, the guidance suggests that the timing of medications may need to be altered to allow the COVID-19 vaccine to do its job. This may apply to patients taking methotrexate, JAK inhibitors, Abatacept (Orencia), Rituximab (Rituxan), or cyclophosphamide infusion. Again, talk to your doctor!
Studies are ongoing regarding the duration of effectiveness of all the vaccinations over time, in the general population and in specific patient groups, like people with a chronic illness.
Which vaccine is right for patients with a chronic illness?
Whichever vaccine is offered by a health provider or vaccination clinic is the right one for patients with a chronic illness. There are no meaningful differences that make one better or worse than another.
In the rare event that a non-serious side effect occurs following the first dose of the COVID-19 vaccine, it is still recommended that everyone get their second dose. A non-serious side effect includes pain and swelling at the injection site, fever, chills, fatigue, and headache. You might feel like you have a mild flu, but this will likely subside within 24 hours. A serious side effect would be an allergic, anaphylactic reaction.
While you should talk to your doctor, the CDC also recommends that people get vaccinated even if in the past a patient has had reactions to a different biologic infusion/injection. Only two reasons are considered contraindications to vaccination:
- Severe allergic reaction (e.g., anaphylaxis) after a previous dose or to a component of the COVID-19 vaccine (such as PEG or polysorbate)
- An immediate allergic reaction of any severity to a previous dose or known (diagnosed) allergy to a component of the vaccine
Not, sure if this applies to you? The CDC provides a full list of the ingredients9 included in all three COVID-19 vaccines authorized in the United States.
There is no reason to be tested for antibodies before or after vaccination. The vaccine manufacturers and government partners have followed all the normal procedures to develop these vaccines even if they were developed at a quicker rate than normal. In fact, the rapid vaccine development is a true testament to what can be accomplished with true, global cooperation and investment.
What to do after vaccination
Until a larger percentage of your local community and the country at large is vaccinated, it is recommended that all people, but especially those who have a chronic illness and might be immunocompromised, follow current public health guidelines, especially pertaining to wearing a mask, physical distancing, and avoiding crowds where you are unsure if others around you may or may not be vaccinated.
As summer approaches, different states may have different guidelines for public gatherings, so if you plan to travel, make sure to check on local rules. The CDC also updated its guidance for people who are fully vaccinated for outdoor activities10 in late April. To be considered, “fully vaccinated” a person must be two weeks past their second dose of the Pfizer or Moderna vaccine or the single dose of the Johnson & Johnson vaccine.
In early June 2021, there were over 33 million COVID-19 cases reported by the CDC11, but deaths are on a downward trend. However, more than 60 percent12 of the U.S. population 12 years and old has had at least one dose of the vaccine. As those numbers improve, our pandemic precautions will slowly relax.
Soon, the pandemic will be in the past, but only if everyone does their part to protect each other through vaccination and public health measures.
To keep abreast of the COVID-19 pandemic and what people living with chronic disease need to know, join the Global Healthy Living Foundation COVID-19 Patient Support Program at www.ghlf.org
- Global Healthy Living Foundation, COVID19 Support Progam for Chronic Illness Patients. http://www.ghlf.org/
- GHLF’s FREE COVID-19 Support Program for Chronic Disease Patients and Their Families, CreakyJoints. http://www.creakyjoints.org
- Steven R. Newmark, JD, MPA, In the Face of a Medicaid Tsunami, Telehealth is More Important Than Ever, The Doctor Weighs In. https://thedoctorweighsin.com/medicaid-telehealth/
- Rheumatoid Arthritis and Heart Disease: Why You’re at Increased Risk, CreakyJoints. https://creakyjoints.org/comorbid-conditions/rheumatoid-arthritis-heart-disease-increased-risk/
- Anja Strangfeld, Martin Schäfer, Milena A Gianfrancesco, Saskia Lawson-Tovey, et al. Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry, BMJ Journals. https://ard.bmj.com/content/early/2021/03/07/annrheumdis-2020-219498
- COVID-19 Guidance, COVID-19 Vaccine Clinical Guidance for Patients with Rheumatic and Musculoskeletal Diseases (RMDs), American College of Rheumatology, Updated April 2021. https://www.rheumatology.org/Practice-Quality/Clinical-Support/COVID-19-Guidance
- Five Reasons Why You Should Participate in Clinical Trials, The Doctor Weighs In. https://thedoctorweighsin.com/participate-in-clinical-trials/
- Jeanna Lucci-Canapari and Robert Forman, COVID-19 Vaccine Trials for Young Children Proceed at Yale, Yale School of Medicine, April 2021 https://medicine.yale.edu/news-article/covid-19-vaccine-trials-for-young-children-proceed-at-yale/Interim Clinical Considerations for Use of COVID-19 Vaccines Currently Authorized in the United States
- Interim Clinical Considerations for Use of COVID-19 Vaccines Currently Authorized in the United States, Centers for Disease Control and Prevention.
- Interim Public Health Recommendations for Fully Vaccinated People, Centers for Disease Control and Prevention. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/fully-vaccinated-guidance.htmlCOVID Data Tracker, United States
- COVID-19 Cases, Deaths, and Laboratory Testing (NAATs) by State, Territory, and Jurisdiction, Centers for Disease Control and Prevention. https://covid.cdc.gov/covid-data-tracker/#cases_casesper100klast7days
- COVID Data Tracker, COVID-19 Vaccinations in the United States, Centers for Disease Control and Prevention.
Disclosure Statement: Dr. Hernandez has no disclosures pertaining to the contents of this article or his work at GHLF.
Daniel Hernandez, M.D.
Daniel Hernandez, M.D. earned his BS degree from the University of Texas at San Antonio in 2012. From there, he attended medical school at the Universidad Autonoma de Guadalajara in Guadalajara, Mexico, graduating in 2016.
Dr. Hernandez is the Director of Medical Affairs and Hispanic Outreach for the Global Healthy Living Foundation. In this role, he’s been instrumental in advancing the development of comprehensive, Spanish-language resources for patients. He’s introduced innovative social media platforms, including the first use of WhatsApp by a patient organization to deliver health information directly to Hispanics who favor that platform. He co-founded the International Medical Graduate section, which is now part of the National Hispanic Medical Association.
In 2021, he’s also helped launch ArthritisPower Español, the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allow patients to track their disease and participate in voluntary research studies in a secure and accessible manner.
Dr. Hernandez joined the Global Healthy Living Foundation in 2018, serving first as the Medical Advocacy Liaison for CreakyJoints and CreakyJointsEspanol its international, digital health organizations that provide education, support, advocacy and opportunity to people living with all forms of arthritis. He was responsible for developing English and Spanish-language programming that helped patients living with chronic illness, particularly arthritis, advocate for better access to health information and health resources.
On several occasions, Dr. Hernandez has appeared as a featured expert to speak on health disparities in underrepresented communities. These communities include:
• the Panamerican League of Associations for Rheumatology (PANLAR) organization and Foundation FER,
• contributed articles to the Future of Personal Health and interviews to EFE America, the largest Spanish-language wire news service in the world and
• Magazine-PR, and Everyday Health, among others.
His work also led to secure grants to improve relationships between Hispanic people living with rheumatoid arthritis (RA) and rheumatologists.
Daniel was born in El Paso, Texas