Update – Myasthenia Gravis and Coronavirus

Last reviewed January 3, 2021

Individuals who have myasthenia gravis may be at increased risk for severe COVID-19 illness.  With this in mind, Conquer MG’s Medical Advisory Board continues to review recommendations issued by the Centers for Disease Control (CDC), and offers these general guidelines.

Please note this is not intended to be a substitute for professional medical advice. Be sure to consult with your physician to decide what’s appropriate for your specific situation.

December 2021 Health Advisory Update

Conquer MG’s Medical Advisory notes the CDC is reporting a sharp increase in COVID-19 cases for the month of December 2021. The highly contagious Omicron variant is anticipated to cause a rapid increase in infections over the next few weeks.

All MG patients and families are reminded that getting a vaccine and booster remain the best way to protect against serious illness or hospitalization from COVID. Find your nearest vaccination site at vaccines.gov, or call (833) 621-1284 (in Illinois) or 1-800-232-0233 (TTY 1-888-720-7489) (for other states) to schedule an appointment near you. People who are taking medications that lower their immune system may not be completely protected even if they are fully vaccinated and have received an additional dose

Please protect yourself and your loved ones and wear a well-fitted mask covering your nose and mouth in public indoor spaces even if you are vaccinated. To prevent the spread of disease, celebrate safely over the holidays by keeping gatherings small. Consider getting tested before visiting others.

For testing site information, visit

Please stay home and isolate yourself if you have fever, sore throat, cough, shortness of breath, headache or new loss of taste and smell. 

COVID-19 Vaccine – Third Dose/Booster

Guidelines and recommendations continue to evolve as more data become available.

Additional (Third Dose) 

  • The CDC recommends that people with moderately to severely compromised immune systems receive an additional (third) vaccine dose 28 days or later after a second dose of the Pfizer-BioNTech COVID-19 vaccine or Moderna COVID-19 vaccine. This applies to individuals who have myasthenia gravis and are taking immunosuppressant treatments such as chronic prednisone, tacrolimus, azathioprine, and others. Guidance for the Johnson & Johnson vaccine is pending.
  • It’s recommended you get a third dose of the same vaccine product as you received originally. 

Booster

  • The CDC recommends that all individuals age 18 and older should receive a booster shot of any of  the COVID-19 vaccines authorized in the United States. If you originally received the Pfizer or Moderna COVID vaccine, you should get the booster once 6 months have passed since your original vaccine series was compledte. If you originally received the Johnson & Johnson  vaccine, you should get the booster once 2 months have passed since your original vaccine. Teenagers ages 16-17 who originally received a Pfizer-BioNTech vaccine may receive a Pfizer booster after considering their individual risks and benefits. Read more.

Initial COVID-19 Vaccine

  • MG patients should get vaccinated. Generally, we anticipate that the risks associated with the COVID-19 vaccine will be relatively small compared to the risk of contracting the disease itself.

The CDC states, “People with autoimmune conditions were eligible for enrollment in COVID-19 vaccine clinical trials. No imbalances were observed in the occurrence of symptoms consistent with autoimmune conditions or inflammatory disorders in clinical trial participants who received COVID-19 vaccine compared to placebo. People with autoimmune conditions may receive any FDA-authorized COVID-19 vaccine.”

  • If you are taking immunosuppressant medication for a condition such as myasthenia (this includes common MG treatments such as prednisone, azathioprine, mycophenolate mofetil, and others), you may NOT be fully protected even if you are fully vaccinated. Talk to your healthcare provider. Even after vaccination, you may need to continue taking precautions such as wearing a mask, social distancing, and staying out of crowds.

Q: Is there a way to tell how effect how effective the COVID-19 vaccine is for me?

A: How well the vaccines work will depend upon your immunosuppression at the time of receiving the vaccine dose(s). This varies from person to person, and will depend on your overall health, age, and medication dose. The National Institutes for Health (NIH) is conducting research that examines the immune response to COVID-19 vaccination in people with different immune disorders or on immunosuppressive medications.

Q: I’m just taking pyridostigmine bromide to treat my MG. Does that reduce the effectiveness of my COVID-19 vaccine?

A: We don’t believe so. Pyridostigmine bromide does not work by suppressing the immune system.

  • It’s recommended that persons who have myasthenia avoid any vaccine made from a live or weakened virus. However, the COVID-19 vaccines approved for use in the U.S. (made by Moderna, Pfizer, and Janssen (Johnson & Johnson)) do not contain a live or weakened COVID virus, though the Jannsen version uses a viral vector as the delivery method.
  • More than one vaccine is being developed for COVID-19. There is not yet enough information to say which vaccine will be better for the MG population.
    • The CDC and FDA have investigated reports of a very rare condition called thrombosis with thrombocytopenia syndrome (TTS) (blood clotting with low blood platelet counts). A warning has been attached to the Johnson & Johnson vaccine noting rare blood clotting events might occur after vaccination, primarily among women aged 18-49 years, and that providers and patients alike should watch for signs of this condition so it can be treated promptly.
    • Although not yet approved for use in the U.S., we continue to watch reports about the COVID-19 vaccine made by AstraZeneca. The same warning about rare blood clotting events that applies to the Johnson & Johnson vaccine is now attached to the AstraZeneca vaccine. 
  • Persons receiving monoclonal antibody therapy (such as rituximab or Soliris®) for myasthenia should discuss with their doctors how to time the COVID-19 vaccine so the vaccine is most effective. For rituximab, it’s suggested individuals get the first vaccine dose 6 weeks before rituximab treatment, and the second vaccine dose 4 weeks before another treatment.

COVID-19 and MG: Guidance You Can Trust

About COVID-19

The strain of the coronavirus causing this illness is called COVID-19. The virus is thought to spread through respiratory droplets produced when an infected person coughs or sneezes. It may be possible to acquire the illness if you’re near someone who is ill, or by touching a contaminated surface. Variants of the virus that causes COVID-19 have and are expected to continue to emerge.

Coronavirus symptoms range from mild cold-like illness to severe breathing difficulty.

What Information is Reliable?

The content on this page was created by expert doctors and researchers in the MG community. In addition, these sources – the Center for Disease Control (CDC) and the World Health Organization (WHO) – offer trustworthy information:

Advice from the CDC

Whether your community has high infection rates or high vaccination rates, those most at risk for serious illness from COVID-19 continue to include older individuals and those who have serious chronic medical conditions. This includes people who are immunocompromised, such as people receiving immunosuppressant treatments for myasthenia gravis.

If you are at higher risk of getting very sick from COVID-19, you should continue to take precautions recommended for unvaccinated people until advised otherwise by your health care provider:

  • Wear a mask in indoor public places.
  • In areas with high numbers of COVID-19 cases, consider wearing a mask in crowded outdoor settings and for activities with close contact with others who are not fully vaccinated.
  • Take everyday precautions to keep space between yourself and others. Put a distance of at least six feet between yourself and others who don’t live in your household.
  • Avoid close contact with people who are sick.
  • Avoid crowds and poorly ventilated spaces.
  • Wash your hands often.
  • Cover your coughs and sneezes. If you are wearing a mask at the time, put on a new, clean mask as soon as possible. Wash your hands immediately.
  • Clean high-touch surfaces daily.
  • Be alert for symptoms. Watch for fever, cough, shortness of breath, or other symptoms of COVID-19

For more information, click these:

 

Most Popular: Exercise, Nutrition, MG Treatment, Vision

Check out these resources for often-asked-about MG topics. *Our favorites are noted with an asterisk.

Exercise and health when facing MG

Exercise and MG

*MG Wellness: Myasthenia Gravis and Exercise, June 2020. “If your MG has stabilized, exercise can be part of your recovery,” notes Julie Rowin, MD. She and Julie Hossack, certified fitness instructor, explain how to gradually resume exercise if you’re deconditioned from illness.

WATCH FULL VIDEO, WATCH EXERCISE DEMONSTRATION ONLY

READ HIGHLIGHTS, READ HANDOUT – Start Your Exercise Routine

JOIN THE FACEBOOK “MG & EXERCISE” GROUP to get encouragement and answers.

Exercise and Myasthenia Gravis- AMackowiak, JFord, October 2017. Neurophysical therapists Angela Mackowiak and Jennifer Ford, NorthShore University Health System, discuss ways individuals with myasthenia gravis can resume activity once their illness is stable.  WATCH VIDEO

 Myasthenia Gravis and Exercise, October 2014. Physical therapist Brittany White offers exercise guidelines for myasthenia gravis patients. WATCH VIDEO EXCERPT, READ ARTICLES: Exercises for Posture and BreathingSummary – MG and Exercise

 

Nutrition and MG

Coming in 2021: Nutrition webinars!

*8 Ways to Optimize Immune Health Naturally, April 2020. Julie Rowin, MD, identifies specific ways to eat for a more effective and balanced immune system. READ NOW

Building Muscle at Any Age, Summer 2020. Julie Rowin, MD, explains, “The benefits of maintaining muscle mass at any age cannot be underestimated.” READ NOW

 Functional Medicine Approach to Treating Myasthenia Gravis, May 2016. Julie Rowin, MD, ABIHM, discusses the root cause of autoimmune diseases such as MG: a combination of genetics and enviromental factors of toxic chemicals, dietary components, gut dysbiosis, and infections. She explains how functional medicine seeks to restore and rebalance the body’s interworking systems. WATCH VIDEO

Myasthenia Gravis and Nutrition, October 2014. Jennifer Koman, registered dietitian, explains ways for MG patients to cope with chewing and swallowing issues, sodium reduction and diarrhea. WATCH VIDEO, GET  HANDOUTS

 

Stress Management and MG

*Wellness Now: Own Your Health In a COVID-19 World, May 2020. Julie Rowin, MD, and Maria D. Zepeda, National Board Certified Health and Wellness Coach, discuss ways to combat pandemic stressors of loneliness, overeating, too much time indoors, and cleaning product exposure. WATCH VIDEOREAD HIGHLIGHTS

Meditative Breathing, July 2020. Jill Crockett, instructor and owner of Molcintah Yoga Studio, and Julie Rowin, MD, discuss health benefits that occur when you set aside time to focus on the rhythm of breathing. Includes a guided demonstration to use this always available, always affordable tool of breath. WATCH VIDEOREAD HIGHLIGHTS

Myasthenia Gravis and Stress Management, October 2013. Deb Smith, M.Ed., LCPC, discusses 7 ways (“A-C-C-E-P-T-S”) to cope with stress. WATCH VIDEO

Meditation as Medication, October 2013. Dr. Tim Fior describes benefits of meditation, then provides beginners with easy-to-follow steps to meditate. WATCH VIDEO

 

MG Treatments

MG101, October 2015. Matthew Meriggioli, MD, Chicago, explains that different types of MG may call for different treatment depending on antibody type, thymus issues, and age at onset. Describes first symptoms and MuSK antibody MG differences. WATCH VIDEO

*IVIg, Plasmapheresis, and New Therapies, April 2019. Ryan Jacobson, MD, Assistant Professor of Neurology with Rush University Medical Center of Chicago, explains key and emerging treatments for MG. WATCH VIDEOREAD HIGHLIGHTS

Clinical Trials: What MG patients need to know, October 2019.  Rabia Malik, MD, Rush University, explains informed consent, eligibility criteria, and the patient experience in a clinical trial. WATCH VIDEO, READ HIGHLIGHTS

Better Breathing through Technology, October 2018. Sally O’Meara addresses how myasthenia gravis can affect breathing, tools that help (BiPap machines, Trilogy home ventilators), and when your insurance can cover them. WATCH VIDEO

Myasthenia Gravis and Telemedicine, December 2020. Rabia Malik, MD, Rush University Medical Center, explains how to make the most of your telemedicine visit if you have MG – how to position your phone/camera, having a support person if you need one, and what parts of the neurological exam work well. WATCH VIDEO, READ HIGHLIGHTS

Myasthenia Gravis and Drug Interactions – Antibiotics, October 2016. Mitra Habibi, PharmD, UIC Chicago College of Pharmacy, explains medication warnings associated with antibiotics that apply to MG patients. WATCH VIDEO

*MHabibi: Myasthenia Gravis and Drug Interactions, October 2016. (full presentation) Mitra Habibi, PharmD, UIC Chicago College of Pharmacy, explains medication warnings and potential drug interactions with common prescription drugs for MG patients. Topics: black box warnings, antibiotic cautions, info on pain medication, steroid side effects, magnesium, statins, and quinine. WATCH VIDEO

Myasthenia Gravis: Side Effects of Common Treatments, April 2014. Dr. Alex Barboi discusses side effects of prednisone, a common drug used to treat MG. WATCH VIDEO

 

Vision Issues with Myasthenia Gravis (MG)

Vision Issues

Vision Issues and Myasthenia Gravis, July 2017. Thomas Mizen, MD, neuro-ophthalmologist at Rush University Medical Center, Chicago, Illinois, explains myasthenia gravis symptoms of fluctuating double vision and drooping eyelids, types of myasthenia (ocular, generalized), and treatments including drug therapies and thymectomy. WATCH VIDEO , READ HIGHLIGHTS

*I saw two pitchers…on two mounds. Coping with MG vision issues. READ MORE

August newsletter – Vision Issue, pages 5-7, August 2013. Prisms, living with low vision, prednisone side effects on vision.  READ MORE

 

 

Virtual Viking Run/Walk for Myasthenia Gravis

 

2020 Virtual Run/Walk Goes Virtual!

June 14-30, 2020

The pandemic forced everyone to change plans. In March, just days after Conquer MG’s  Run/Walk Committee scouted a new location (trees, bathrooms, parking!), it became clear  that we couldn’t gather in person for the 8th Annual Viking Run/Walk.
But… the Run/Walk is essential to the mission and financial strength of this organization. What could we do? Answer: Virtual!
But…what will it look like? And will they come?
Thanks to many supportive individuals, we didn’t need to worry. You walked and ran and biked on your own schedule, in your own neighborhood. And you donated and fundraised to the tune of nearly $20,000.
Thank you for acting like warriors to support our mission. Together we can conquer myasthenia gravis!

Thanks to all our donors!

Rosecrans Raiders – Bob, Marlene, Janine, Megan, Bob

Glen Ostdiek with Peggy Cashman

We’re grateful for each and every person who helped support this organization in whatever way they could through the Virtual Viking Run/Walk. Thanks, especially, to these top fundraisers:
  1. Bob Rosecrans, Rosecrans Raiders ($2,095)
  2. Peggy Cashman, Park Place Pacers ($1,810) (Shown with Glen Ostdiek, supporter for many years)
  3. Michael Brady, The Rainbow Men ($1,795)
  4. Sydney Miranda ($1,745)
  5. Arthur & Julie McCracken ($1,285)
  6. Tracy Shackelford, Teal We Find a Cure ($856)
  7. Steve & Dorothy Litwitz, Team Steevie ($605)
  8. Tom Banks, Banks Warriors ($515)
As top fundraiser, Bob Rosecrans receives a CVS gift card plus an Egg Harbor Cafe gift certificate.

And oh, those photos!

 

Victor Yipp, Best Viking

Jean Fee, best t-shirt

As part of the Virtual Viking Run/Walk, Conquer MG pledged to award prizes for best photos. Winners (with CVS gift card):
  • Best Viking: Victor Yipp
  • Best T-shirt: Jean Fee (#1 “Myasthenia Gravis Bites”)

Megan Rosecrans, T-shirt Honorable Mention

SeAnn Ferguson (2nd from left) & Team, Honorable Mention

Honorable Mention (with bragging rights):
  • Megan Rosecrans (#2 t-shirt “Work out like a Viking/You’ll be Thor in the morning”)
  • SeAnn Ferguson (2nd from left, in turquoise t-shirt) and her team for the most different MG shirts

Lonnie Smith (5th from left) and his team take it outdoors.

SeAnn Ferguson’s team takes it around the neighborhood.

SeAnn with her strongest supporters: husband Jobez and parents Sandra and Stanley Collins

 

Thank you, Sponsors

We’re grateful for the meaningful support provided by these organizations.
    

 

Blasts from the Past

Check out LOTS more photos from past years on our Facebook page.

Janet Bauer’s team was ready to Conquer MG!

Bob Ratzel offers up Connie’s Crunchie cookies for sale.

Sophia gives grandmother Vi a hug.

Janet Bauer’s Family & Friends: “Somewhere Over the Rainbow There’s a Cure for MG!”