Please come join us and register at link below
Community Resources & How to Navigate Them Successfully
10:10–10:45 a.m. CDT (11:10 EDT)
Andrew Robinson, MSW, LMSW
Heartland Chapter Patient Navigator
Our Patient Navigator will provide an overview of the resources that are available in the community and how to best access those resources. He will discuss resource assistance for insurance, utilities, transportation, prescriptions, and others. He will also share resources and programs available through the Heartland Chapter.
Bringing Lupus Nephritis Out of the Shadows
Donald E. Thomas, Jr., M.D., FACP, FACR
Associate Professor of Medicine at the Uniformed Services
University of the Health Sciences and a Rheumatologist at
Arthritis and Pain of Prince George’s County, Maryland
Join us and ALL IN™ for a virtual discussion featuring Dr. Thomas about lupus and lupus nephritis. The presentation and Q & A session are brought to you by Aurinia Pharma U.S., Inc.
COVID-19 Vaccines & Lupus Update
11:30 a.m.–12:00 p.m.
Alfred H. Kim, MD, PhD
Co-Director, Lupus Clinic at Washington University, Assistant
Professor of Medicine, Division of Rheumatology, Washington
University School of Medicine
Dr. Kim will provide an update on the Washington University School of Medicine trial evaluating the safety and effectiveness of COVID-19 vaccines in people taking immunosuppressives.
Closing the Gap on Health Disparities
Ashira Blazer, MD, MSCI
Assistant Professor of Medicine, Division of Rheumatology, NYU Langone Medical Center Bellevue Arthritis Clinic
Lupus disproportionately affects women of color, particularly black women. The implicit and explicit bias within the healthcare system may prevent them from receiving a timely diagnosis and the best care possible. Dr. Blazer will discuss ways to close this gap through education, awareness, and advocacy.
Managing Your Lupus: How You Can Take a More Active Role & Meditation Exercise
Arnita Christie, RN, BSN, MS Patient Engagement Liaison at GSK
Learn how you can take an active role in managing your lupus. You will learn more about the disease and how it affects your body, resources that can help you monitor your symptoms, how to communicate with your healthcare team, and the steps you can take to control lupus. Arnita will end with a guided meditation exercise. The presentation and Q & A Session are brought to you by GSK Us in Lupus.
Each session includes time for Q & A
QUESTION OF THE DAY:
Dr. T. I have lupus. I got both of my Moderna COVID vaccines. Can I take off my mask like the CDC recommends?
I am so glad you asked this question!
NO! (generally, see exceptions below)
The CDC's recommendation that vaccinated people can be outside without a mask and indoors when around other vaccinated people apply to the general public.
However, we do not know how well the vaccines work in people with autoimmune diseases?
I am so happy you got vaccinated. Until many more of us get vaccinated, life can't get back to "normal." Although, it is not guaranteed that you responded to the vaccine, if the COVID vaccine goes in line with other lupus vaccine studies, there should at least be some protection. Exceptions would include those who are heavily immunosuppressed may not have a very good response (for example, someone on rituximab who gets vaccinated a month or so after their treatment are unlikely to have a robust response).
Please continue to protect yourself with social distancing. Protect yourself at all times similar to how the CDC recommended prior to the vaccines.
Ask you friends and family to strongly consider getting vaccinated to help protect you as well (the cocoon effect)
If you have very mild lupus that has been in remission, you are young with no other health problems, and you take only hydroxychloroquine as your medication, they you could possibly do OK by not wearing a mask via the May 2021 guidelines for people who have been vaccinated.
Please ask your rheumatologist for their advice.
CDC Study answers this question
QUESTION: How effective is just one COVID-19 vaccine if you did not get the second?
Type of study? A Centers for Disease Study
Where? 33 sites in 25 states (U.S. study)
Who? Health Care Provider recipients of Pfizer and Moderna vaccines
Results? One vaccine offered an 82% protection rate (Pfizer, Moderna)
94% for 2 doses. This similar to what we saw in the clinical trials
How about people with lupus, Sjogren's and other autoimmune diseases?
- They were not studied
- However, there are active studies being done at the NIH, Johns Hopkins, etc
- If you live near Bethesda, MD, call the NIH nurses at 301-435-4489 and 301-451-4990; tell them Dr. Thomas sent you
- If you have an autoimmune disorder, especially if you are on immunosuppressant therapy, you are at higher risk of bad outcomes from COVID-19 infection.
- It is imperative you get vaccinated
- Make sure to stop your immunosuppressants appropriately for vaccination (but ask your doctor 1st to check)
Here is a link on how to stop meds for the vaccines:
- If you get vaccinated, pretend you are as vulnerable as if you did not get vaccinated
- Still practice social distancing
- Ignore the CDC guidance for others who are vaccinated... i.e. still wear your masks and socially distance from everyone and plead the unvaccinated to just stay away from you (I always worry about my patients)
REFERENCE: ACR, COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Developed by the ACR COVID-19 Vaccine Clinical Guidance Task Force.
Pilishvili T, Fleming-Dutra KE, Farrar JL, et al. Interim Estimates of Vaccine Effectiveness of Pfizer-BioNTech and Moderna COVID-19 Vaccines Among Health Care Personnel — 33 U.S. Sites, January–March 2021. MMWR Morb Mortal Wkly Rep. ePub: 14 May 2021. DOI: http://dx.doi.org/10.15585/mmwr.mm7020e2external icon.
Please enter our NIH study to help us find out how the COVID-19 vaccine affects people with autoimmune disorders
Results from 64,900 vaccines: Allergy Risk?
Journal of the American Medical Association Research Study: March 2021
(reference and link to the study are at the bottom of the page)
Easy-to-Read Results Summary:
- Researchers did this study based on the fact that many are nervous to get the vaccines due to having allergies themselves and all the media-hype regarding allergic reactions causes some people to avoid the vaccines.
So... what is the truth?
- Study was done at Massachusetts General Brigham (the Original Harvard hospital!)
- Studied what happened the 3 days after the first vaccine (the time of highest chances for allergy symptoms)
- 40% got Pfizer, 60% Moderna
Mild allergic reactions
- 1 out of every 50 vaccines caused mild allergic reactions (itch, hives, swelling)
- Moderna (2.2% of the shots caused mild allergy) vs Pfizer (2% of the shots): not much difference
- 98% of all people had no allergic reactions at all (that is a nice, safe number)
Significant allergic reactions (anaphylaxis)
- Occurred in 1 out of every 3700 Pfizer shots (i.e. .027% of the shots)
- Occurred in 1 out of every 4300 Moderna shots (i.e. .023% of the shots)
- In total, there were 5 anaphylactic reactions per 20,000 vaccines (that is a really safe number compared to many other drugs)
Timing for significant allergic reaction (anaphylaxis)
- An average of 17 minutes after the shot
- The range was from immediately after the shot up to 2 hours later at the latest
- 7 of the 16 patients had mild skin reactions
- 9 of the 16 patients had "measurable" but not life-threatening reactions
- 3 did not seek any medical attention
- 1 went to the ICU and recovered
- 9 out of 16 patients needed an epinephrine shot (EpiPen) and all recovered
- There were no severe anaphylactic reactions (having shock or requiring intubation)
Who was most likely to get anaphylaxis?
- Out of 16 patients in total, 5 (31%) had a history of anaphylaxis
- 10 out of 16 (61%) had a history of allergies (probably not significantly different than the usual population)
"I have a history of anaphylaxis, what is my risk?"
- Assuming there were 4000 individuals with severe food or drug allergies in this group (this is the expected #)
- Only 5 out of 4000 people with a history of anaphylaxis get an anaphylactic reaction (1 out of every 800)
- Knowing that this is a group of people who are used to planning for anaphylaxis and should have an EpiPen, and who know they have to use it when exposed to a known allergen (like me when I accidentally eat shrimp), that is an incredibly low number.
- I took my EpiPen with me when I got mine. No problems! Only 1 out of every 800 times would someone need to use it
- Since the results were reported by the employees themselves, and not confirmed by doctors, we cannot ensure that these were truly anaphylactic reactions (people do tend to overestimate such responses = my opinion)
- The researchers, Harvard-famous allergy experts, stated, "... the overall risk of anaphylaxis to an mRNA COVID-19 vaccine remains extremely low"
If you have had an anaphylactic reaction in the past (like I have), I recommend:
- Just take your EpiPen and wait a while after your shot if you have had anaphylaxis before. However, don't sweat it.
You have a higher chance of getting into a car accident on the way to the shot than you do of getting an anaphylactic reaction
Did you get your vaccine? How did you do?
COMMENT BY CLICKING ON "Comments" ABOVE
Reference: Blumenthal KG, Robinson LB, Camargo CA, et al. Acute Allergic Reactions to mRNA COVID-19 Vaccines. JAMA. Published online March 08, 2021. doi:10.1001/jama.2021.3976
10.5% of lupus and rheumatic disease patients died
Results of a world-wide study of 3729 rheumatic disease patients and COVID-19
- Earlier reports in early 2020 suggested that lupus patients may not have been at higher risk of COVID-19 complications. This report (referenced below) questions this.
- This report looked at 3729 patient. It included patients with systemic lupus, but it did not specify how many lupus patients nor how they did compared to other patients. However, it looked at the risk for death in patients receiving various drugs, patients with certain comorbidities, disease activity risks, sex, and countries of residence.
BAD FINDINGS FROM THE STUDY
Rheumatic disease patients at highest risk for death after infected with COVID-19 (listed in order)
(these results will be given in odds ratios.
To figure out how to word this (odds ratio findings):
Subtract 1 from the number, move the decimal point 2 to the right, then say "___ greater odds of dying from COVID-19."
For example, for an 80 year old with a rheumatic disease, they have a 518% greater odds of dying from COVID-19. A man with a rheumatic disease has a 68% greater odds of dying from COVID-19 infection than a woman does.")
- Age >75 years old, OR 6.18
- Rituximab (Rituxan) treatment, OR 4.04
- Sulfasalazine treatment, OR 3.60 (see commentary below)
- Age 66-75, OR 3.00
- Immunosuppressant treatments listed below, OR 2.22
(tacrolimus, mycophenolate, cyclosporine, cyclophosphamide, azathioprine)
- Not on a disease modifying agent immunosuppressant, OR 2.11 (compared to patients on methotrexate)
- Moderate to high disease activity, OR 1.87 (compared to patients in remission and low disease activity)
- High blood pressure plus heart disease, history of stroke, or hardening of the arteries, OR 1.89
- Prednisone more than 10 mg daily (or more than 8 mg methylprednisolone), OR 1.69 (compared to no steroids)
- Chronic lung disease (like COPD, asthma, interstitial lung disease, pulmonary fibrosis), OR 1.68
- Men, OR 1.46 (compared to women)
United Kingdom had the highest death rate followed by Germany
Commentary about sulfasalazine (SSZ): Do not take away from this that SSZ increases deaths from COVID-19. SSZ is often prescribed by rheumatologists to sicker patients who are at higher risk for infections in the first place. For example, there were more smokers in the SSZ group. SSZ does not suppress the immune system. Also, SSZ is a weak drug (most often used to treat rheumatoid arthritis). Patients on just SSZ are less likely to be in remission or low disease activity (and therefore at higher risk of death from a COVID-19 infection). I suspect that this is an "association" and not a "causality."
POSITIVE FINDINGS FROM THE STUDY
- Hydroxychloroquine (Plaquenil) and belimumab (Benlysta) treatments were not associated with higher death
- TNF inhibitor, leflunomide, abatacept (Orencia), tocilizumab treatments were not associated with higher death
- The United States had the lowest death rate of all countries in the study
- After the US, countries (in order) of lowest death rates = Germany, then France, then Spain
BOTTOM LINE AND WHAT YOU SHOULD DO TO PROTECT YOURSELF:
- It is most important to keep your lupus under control. Do NOT stop any medications.
- Abide by all nondrug ways to lower lupus disease activity so you don't need as many steroids.
- Work hard with your doctor to control your disease better so you can lower your steroid dose.
- Get vaccinated against COVID-19!
- Ask everyone around you to get vaccinated (the cocoon strategy)
- Even after vaccination, abide by all isolation, separation, social distancing strategies
Reference: Strangfeld A, Schäfer M, Gianfrancesco MA, 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. Annals of the Rheumatic Diseases Published Online First: 27 January 2021. doi: 10.1136/annrheumdis-2020-219498
This is a list of recommendations on what to do with immunosuppressant drugs and COVID vaccine
The above come from the FEB 2021 ACR published guidelines. You can find the entire article here
Revised with new drugs to stop for vaccines 6/13/21
You only need to adjust mycophenolate, methotrexate, Xeljanz, Olumiant, Rinvoq, Orencia, cyclophosphamide, rituximab, NSAIDs, and Tylenol
Please check with your doctor and ask before implementing these. Your medical condition may dictate otherwise
Resource: American College of Rheumatology ACR COVID-19 Vaccine Clinical Guidance Task Force (2/8/21). COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. Retrieved on 2/25/21 from https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf
Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.
DONALD THOMAS, MD