Many in our MOG-AD community have been asking whether they should consider taking the COVID-19 vaccination. Michael Levy, MD, PhD and Head of The NMO Clinic and Research Laboratory at Massachusetts General Hospital, recently made a supporting statement on the The NMO Clinic private Facebook group. We wanted to share this to our email subscribers and members of our private Facebook group, MOG Antibody / Anti MOG Support And Info.
Vaccination is a big decision and unique to each individual, which makes it a personal journey with their treating medical professional. The intent of this post is to help guide the personal decision-making process with factual information and insight. The following statement, while written in the context of NMOSD, provides direction from Dr. Levy, which he has confirmed is also applicable to MOG-AD. His statement is as follows, reprinted with his permission:
NOTE: Since this initial post, Dr. Michael Levy has updated his statement with additional considerations:
“Very important point. If a vaccine triggered a relapse in the past, you should NOT get the COVID vaccine, just in case.
Based on the data I’ve reviewed in the Pfizer filing, it appears that the RNA COVID vaccine they released should be relatively safe for NMO patients.
As with any vaccine, it is safer to get the vaccine while on NMO therapy even if the efficacy is dulled a little. Both the Pfizer and Moderna vaccines add a second booster shot so I don’t think any of the immunotherapies will interfere with efficacy.
I don’t know the risk of relapse from the vaccine. It does not include any adjuvants so I do not think it is likely to trigger a relapse.
There are side effects, especially after the second shot, including pain, soreness and swelling at the site of the injection, as well as headaches and fatigue in more than half of participants. The placebo group also got lots of headaches and fatigue, but the vaccine group got more. Out of 30,000+ participants, there were < 0.1% rare serious events which were largely divided equally between the vaccine and placebo arms. Those serious events were things like appendicitis that NMO patients are not at risk for. So overall, I would recommend NMO patients take the RNA vaccine if they have the opportunity to do so.”
Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the research unit in the new Division of Neuroimmunology at the Massachusetts General Hospital. His mission is to build a combined clinical and research neuroimmunology program to develop therapies for patients with autoimmune diseases of the central nervous system. Dr. Levy moved from Baltimore, MD, where he was on the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic. You can read more about Dr. Levy on our website: https://mogproject.org/about/#levy
You can also read about his MOG Initiative at Massachusetts General Hospital on our website: