(Resources Page Updated May 17, 2021)
MGFA Medical Professionals Recommend Continued Caution for MG Patients
(Updated May 17, 2021)
The CDC has provided new guidance on COVID-19 vaccinations, face coverings, and the lifting of certain, select guidelines for managing the pandemic. The MGFA medical team continues to stress its recommendation that all MG patients get the COVID-19 vaccine as soon as possible. We must reinforce that researchers still do not have adequate data on the level of protection that the vaccine provides patients that are on immunosuppressive treatments. Most MG patients are using a form, or multiple forms of immunosuppressants. Therefore, we will continue to recommend that MG patients follow the CDC guidance for unvaccinated people (that is, masking, social distancing, hand washing) – particularly when patients are in close proximity to people with an unknown vaccination status.
Continue consulting with your treating neurologist to discuss your individual situation and risks. And also continue encouraging those with whom you live with, or people you socialize with, to get vaccinated to keep you safe. CDC Vaccine statements and updates can be accessed at this webpage.
Myasthenia Experts Provide Updated Guidance for MG Patients
An abundance of caution is still the required approach for patients on immunosuppressant therapies.
(Updated April 28, 2021)
“If you have a condition such as myasthenia gravis, or are taking medications that weaken your immune system, you might NOT be fully protected from COVID-19 even if you are fully vaccinated. Talk to your healthcare provider, doctors, and specialists. Even after vaccination, you may need to continue taking all precautions such as face-coverings, social distancing, cleaning, and quarantining.”
We still do not know if the vaccines are completely effective for patients on immunosuppressant therapies, which accounts for the majority of MG patients. There is imperfect data on this issue. We do not believe that fully-vaccinated MG patients on full doses of immunosuppressants should return to unmasked activities, especially with unvaccinated people or in more crowded settings.
Read the latest CDC article concerning COVID prevention in this Link.
**Disclaimer: MG patients should always speak to their own doctors and specialists first in order to build a health strategy during this COVID-19 pandemic. The aforementioned guidance contains general medical opinions from MG experts and should not be used as direct, specific requirements for every MG patient. Every case of MG is different...we are all snowflakes.
Hot News: Apply for the Emergency Broadband Benefit
The FCC announced that on May 12, 2021, eligible households will be able to apply for the Emergency Broadband Benefit.
“Families in every corner of the country have been struggling to get online throughout this pandemic. For those families, we now say ‘help is around the corner.’ In less than two weeks, we will have a new way for disconnected Americans to access the internet to carry out their day-to-day life, so they can reach the virtual classroom, take advantage of telehealth, and seek new employment opportunities.”
Beginning on May 12 households can apply in three ways:
- Contact your preferred participating broadband provider directly to learn about their application process.
- Go to GetEmergencyBroadband.org to apply online and to find participating providers near you.
- Call 833-511-0311 for a mail-in application, and return it along with proof of eligibility to: Emergency Broadband Support Center
P.O. Box 7081
London, KY 40742
Materials that partners can use to help promote the Emergency Broadband Benefit to the communities they serve will be available soon on www.fcc.gov/emergency-broadband-benefit-outreach-toolkit.
CDC Recommends Lift on Pause of Johnson & Johnson Vaccine
April 23, 2021
Federal authorities have strongly recommended eliminating the pause on the Johnson & Johnson COVID-19 vaccine after a detailed study and assessment. The U.S. federal government recommends that vaccines should resume. The pause was instituted after cases of blood clots were discovered in some COVID patients. This CDC press release highlights the announcement.
U.S. Federal Government Urges Pause on Johnson & Johnson COVID-19 Vaccine
April 13, 2021
Federal authorities on Tuesday recommended that states stop using Johnson & Johnson’s Covid-19 vaccine while an investigation is conducted into six rare but serious cases of clotting problems that were reported among women who received the vaccine. This STAT article reports on federal recommendations.
When You've Been Vaccinated, You Can Go Back to Some Things You Did Before
April 9, 2021
CDC guidance is showing that after you've been vaccinated, two weeks after your second vaccination you can begin going back to doing some things you did before, but remain cautious and avoid direct contact to large crowds. See the latest recommendations from CDC.
MGFA CARE-MG Onoing COVID Survey Shows Strong Global Data
April 9, 2021
The MGFA CARE-MG survey is for medical professionals that are reporting out on their MG patients who contract COVID-19. Strong global data updated every couple of weeks. Review Survey Results.
Pfizer Vaccine Reported to Protect Teens 12-15 at High Efficacy Rate
March 31, 2021
Pfizer announced Wednesday that its COVID-19 vaccine is safe and strongly protective in kids as young as 12, a step toward possibly beginning shots in this age group before they head back to school in the fall. READ AP ARTICLE.
Latest COVID-19 Blog
COVID-19 has been with us for over a year, and research about the virus - its effects, and how to fight it - continues to grow. This is great news for patients! We have come a long way since the pandemic began in March 2020. READ THE BLOG HERE
Major European Nations Suspend AstraZeneca; Novavax in Phase 3
The United States is investigating whether AstraZeneca has included outdated trial data in its latest efficacy reporting. (March 23, 2021) Several major European nations have suspended use of the AstraZeneca COVID-19 vaccine this week (March 15, 2021). The suspension is over reports of dangerous blood clots in some recipients, though the company and international regulators say there is no evidence the shot is to blame. On the new vaccine front, Novavax is in phase 3 trial and the U.S. FDA may be evaluating emergency use in the coming months.
Latest news on AstraZeneca
Latest COVID-19 vaccine information from the CDC
Q&A: COVID-19 and MG: The Latest on Vaccines and More
with Srikanth Muppidi, MD
Clinical Associate Professor, Neurology & Neurological Sciences, Stanford Health Care
Dr. Muppidi spoke as part of a regional conference in early 2021. He outlined key thoughts and medical suggestions concerning the COVID-19 virus and its impact on MG patients. We would always suggest that you speak to your own primary and specialist doctors before making health decisions that will impact your MG, but Dr. Muppidi’s responses are informative, and will help you live your life during this pandemic.
Q: Should I stop my immunosuppressant medicine so I’m less likely to get COVID-19?
Stopping your treatment may worsen your MG symptoms. If you get weak and you must be hospitalized, you might increase your risk of getting COVID. We don’t recommend stopping your treatment unless advised by your physician.
Q: How would catching COVID-19 affect my MG?
Data from the CARES-MG patient registry, which tracks people with MG who have had COVID-19 or COVID-like symptoms, shows that the virus tends to worsen myasthenia gravis symptoms. Patients report increased fatigue and weakness. https://myasthenia.org/Professionals/Resources-for-Professionals/CARE-MG
Q: What is the efficacy of the COVID-19 vaccines for MG patients, and what are the risks?
All three vaccines currently authorized for emergency use in the United States are very effective. The vaccines manufactured by Pfizer and Moderna are mRNA vaccines that require two shots, the Pfizer vaccine given three weeks apart, and the Moderna vaccine given four weeks apart. The remarkable thing about these two is that about 12-14 days after the first jab, you have clinically significant immunity. It only gets stronger after the second shot.
The Johnson and Johnson vaccine uses a different technology and only requires one shot. Overall the vaccine is highly effective.
None of the vaccine trials included people who were immunocompromised or immunosuppressed. For that reason, we aren’t sure what the vaccine efficacy is for the MG population. Certain therapies do reduce the efficacy of the vaccine, including Rituximab.
In terms of safety, the clinical trial data was very strong, and there have been no reports of serious side effects from those millions around the world who have so far had the vaccine. Pain at the injection site is the most commonly reported side effect, along with some fatigue, aches, and low-grade fever.
Per CDC data, there have been no reported bad outcomes of immunosuppressed people who have received the vaccine. For that reason, I recommend all MG patients get the vaccine, unless there is a specific reason they can’t, like a history of allergies to a component of the vaccine.
Q: What if you do plasma exchange therapy? Will that effect vaccine efficacy?
Plasma exchange is a treatment for MG in which we remove a patient’s blood, filter out the antibodies that cause myasthenia, and then give it back to you. This is done for both acute patients who are hospitalized, as well as for patients who are not responsive to other therapies.
We don’t know yet if COVID-19 antibodies could be removed from the blood through this process, but researchers have reviewed this issue for other vaccines and found that sufficient antibodies were present to prevent disease. Anecdotally, one of our patients who receive outpatient plasma exchange has continued her therapy, and we’ve found that she still has antibodies against COVID (for many months now).
I recommend that you stick to your regular regimen of treatment while you are getting a COVID vaccine.
Q: Could I get COVID-19 antibodies through IVIG treatment?
In IVIG therapy, a patient receives an infusion of a donated blood product called gamma globulin that helps those with autoimmune disorders get antibodies to fight their illness. Donor blood is pooled from thousands of individuals. Given the level of COVID-19 spread in the United States today, it’s unlikely you could get enough COVID-19 antibodies in one bag of plasma to give you antibodies. I suspect that donation centers may also be screening COVID-19 patients out of their donor pools at present to obtain plasma for treatment of actual patients with COVID.
[Link to your page on IVIG - https://myasthenia.org/What-is-MG/MG-Materials-Webinars/Learn-More-About-MG/intravenous-immunoglobulin-ivig]
Q: Will IVIG treatment reduce the efficacy of the vaccine?
We don’t know. But the reality is that if you’re on IVIG, that means you need it, and you might get weaker by delaying it or canceling. I recommend that my patients stick to their regular treatment plan while getting vaccinated.
Q: Will immunosuppressed patients be included in future vaccine trials?
I am not sure, but we can do population studies, which look at those people who are immunosuppressed and have received the vaccine. What was efficacy like for them? Did side effects differ from the general population? Over time this adds to the pool of knowledge and helps us better understand how MG affects all kinds of vaccines.
MGFA CARE-MG Registry Providing COVID-19 Data with MG Patients
Electronic health record derived-impact of COVID-19 on myasthenia gravis
Journal of Neurological Sciences
Despite not having data from COVID-19 vaccines in MG currently, multiple studies suggest that the influenza vaccine is safe in MG patients for instance [4,5]. Additionally, both work by triggering immune response regardless of preparation differences, and would be expected to have similar safety in MG patients as in the general population. Considering present data available, patients with MG should be prioritized for SARS-CoV-2 vaccination with additional consideration of best practice standards.
READ MORE HERE
MGFA Official Statement on the COVID-19 Vaccine for the MG Community
(Updated on April 13, 2021)
There are multiple vaccines for Covid-19 currently being developed. Receiving a vaccine for Covid-19 and following existing public health measures will reduce the likelihood of contracting the virus. The vaccine will also reduce the spread of disease from one person to another. In the United States, vaccines manufactured by pharmaceutical companies Pfizer, Moderna, and Johnson & Johnson were approved by the U.S. Food & Drug Administration (FDA). These are non-live vaccines that use modified RNA. The Johnson & Johnson vaccine is a "1 dose" vaccine while the Pfizer and Moderna vaccines are "2-dose." There are other global pharmaceuticals that are manufacturing and distributing vaccines in other countries. Please note that vaccines involving both the Johnson & Johnson and AstraZeneca products have been held due to additional, needed research on potential symptoms including blood clots.
The vaccines were tested in people age 12 to 85 years. The majority of study subjects did not have underlying medical conditions. Patients with autoimmune conditions, like myasthenia gravis, were not included in the early testing of these vaccines to date. The most common side effects for people enrolled in the vaccine study were pain at the injection site, fever, chills, and muscle aches. In some cases, these side effects lasted for a few days. There is no risk of developing Covid-19 infection from the vaccine.
At this time, we would recommend these Covid-19 vaccines for patients with autoimmune conditions like myasthenia gravis and for those patients who take medications that suppress the immune system. The Covid-19 pandemic has severely affected people with some underlying medical conditions. It is unknown at this time whether myasthenia gravis (MG) or treatments for autoimmune MG increase the risk of contracting Covid-19 or experiencing more severe disease. However, like with other viruses, getting sick with a Covid-19 infection can bring on a MG exacerbation or crisis. We suggest that patients discuss the Covid vaccine with their neurologist and primary care provider.
Covid-19 vaccines is being distributed by each state according to guidance from the Centers for Disease Control. Certain groups, such as health care workers, nursing home residents, and those with underlying medical conditions, are receiving the vaccine now. In the United States, each state’s health department website will have further information on distribution plans as they become available. It is important to stay in contact with your physicians and monitor your state health department guidelines as the vaccination process unfolds.
U.S. FDA Officially Approves J&J Janssen Biotech COVID-19 vaccine for Immediate Use
The committee met on Friday, February 26, 2021 to discuss EUA of the Janssen Biotech Inc. COVID-19 Vaccine for active immunization to prevent COVID-19 caused by SARS-CoV-2 in individuals 18 years and older. This one-dose vaccine has been officially approved for distribution and use by the FDA, and will be in distribution soon. Read more from the FDA WEBSITE HERE.
Two Myasthenia Patients Proudly Rolled Up Their Sleeves for COVID-19 Vaccination
In a recent new MGFA Insider Blog post, read about two nurses and MG patients who recently were administered thier COVID-19 vaccinations and learn about their unique perspective on getting the vaccine vs contracting full-blown COVID. Check out the link below.
New COVID-19 Vaccine Guidance: AANEM Outlines New Data for Patients with Neuromuscular Disorders
With COVID-19, there is a potential for reduced efficacy of immunizations in patients with reduced immunocompetence. The recent vaccination program for Coronavirus Disease- 2019 (COVID-19) raises several questions regarding the safety and efficacy of this vaccine in individuals with NMDs. In this Practice Statement from the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM), we address the role of vaccine-preventable infections in NMDs and vaccine safety. View this new study in the link below:
CDC Provides Guidance on COVID-19 Vaccine – Mixing Doses and Immunocompromised Patients
There is new information from the CDC concerning COVID-19 vaccines. The CDC says that the vaccines “may be administered to persons with underlying medical conditions who are not allergic or have no contraindications to vaccination.”
“Clinical trials demonstrated similar safety and efficacy profiles in persons with some underlying medical conditions, including those that place them at increased risk for severe COVID-19, compared to persons without comorbidities. Information on groups with specific underlying medical conditions is included below,” according to the CDC. The organization also strongly recommends against mixing doses of several different COVID-19 vaccines.
Read this very informative article from the CDC below.
Links to a Selection of Published Studies on COVID-19 Vaccines
Centers for Disease Control & Prevention (CDC) Vaccine Webpage
CDC vaccination webpage is a valuable resource on vaccine information. This page also links to other strong resources from the CDC and the World Health Organization (WHO).
MGFA Published Survey
How is the novel coronavirus pandemic impacting people with rare diseases and their families? Complete the 20-minute research survey from home or learn more at this link. The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases. The Myasthenia Gravis Foundation of America and Conquer MG partners with RDCRN through its work with the Myasthenia Gravis Rare Disease Network (MGNet).
MGNet Webinar- "Myasthenia Gravis and the COVID-19 Epidemic: Things for you to know"
Presenters: Hana Axelrod, MD, MPH; Henry J. Kaminski, MD; Helen Girma, George Washington University Department of Neurology
We are pleased to share that the MGNet webinar, “MG and COVID-19: Things for you to Know” has been recorded and is available for viewing. We apologize for any technical difficulties in registering or participating in the webinar on March 18.
To view the recording of this webinar, please see here
COVID-19 (Coronavirus)- General Information and Management
MGFA New Resources
Due to the recent news regarding COVID-19 (coronavirus), we are providing some guidance around COVID-19, as well as reliable sources for information. See more information here.
Centers for Disease Control & Prevention (CDC) website:
World Health Organization (WHO) website:
United States Food & Drug Administration (FDA) website: