Many in our MOG-ADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease 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 onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. 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 NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease, provides direction from Dr. Levy, which he has confirmed is also applicable to MOG-ADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease . 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 relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community). in the past, you should NOT get the COVID vaccine, just in case.
Based onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. 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 onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. 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 relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community). from the vaccine. It does not include any adjuvants so I do not think it is likely to trigger a relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community)..
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 autoimmuneA disease in which the immune system incorrectly targets and attacks an individual’s own healthy cells. diseases of the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. Dr. Levy moved from Baltimore, MD, where he was onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic. You can read more about Dr. Levy onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. our website: https://mogproject.org/about/#levy
You can also read about his MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Initiative at Massachusetts General Hospital onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. our website:
https://mogproject.org/resources/from-our-medical-advisory-board/the-mog-initiative/
