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NMSS COVID Vaccine Guidance

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    NMSS COVID Vaccine Guidance

    Overall Society statement on vaccination
    Vaccination against COVID-19 is critical for public safety and, especially, the safety of the most vulnerable among us. Get your vaccine as soon as it is available to you. Please review the full guidance below to learn more about COVID-19 vaccines and multiple sclerosis.

    COVID-19 mRNA vaccine guidance for people living with MS
    People living with multiple sclerosis (MS) are seeking peace of mind on the safety and effectiveness of the COVID-19 vaccines. In response, the Society convened a group of expert researchers and medical professionals to review the available science and make fact-based recommendations.

    We do not know how many people in the vaccine clinical trials had MS, so data on the safety and effectiveness of COVID-19 vaccines in those with MS is not yet available. Our guidance is based on data from the general population in the vaccine clinical trials and data from studies of other vaccines in MS. Our guidance will be updated and become more detailed as more is learned from scientific studies of the vaccines.

    This guidance only applies to the approved mRNA vaccines in the United States, Pfizer BioNTech and Moderna. As there are different vaccines available in other countries, this guidance may not apply to those living outside of the US.

    People with MS should get a COVID-19 vaccine
    The science has shown us that the COVID-19 vaccines are safe and effective. Like other medical decisions, the decision to get a vaccine is best made in partnership with your healthcare provider. Most people with relapsing and progressive forms of MS should be vaccinated. The risks of COVID-19 disease outweigh any potential risks from the vaccine. In addition, members of the same household and close contacts should also get a COVID-19 vaccine when available to decrease the impact of the virus.

    People with progressive MS, those who are older, those who have a higher level of physical disability, those with certain medical conditions (e.g., diabetes, high blood pressure, obesity, heart and lung disease, pregnancy), and Black and Hispanic populations are among groups with the highest risk for hospitalization due to COVID-19. Individuals in these high risk groups are especially encouraged to get the vaccine as soon as it becomes available to you.

    These COVID-19 vaccines require two doses. You need to get both doses for it to work. If you’ve had COVID-19 and recovered, you should also get the vaccine. We don’t know how long someone is protected from getting COVID-19 again.

    The COVID-19 vaccines are safe for people with MS
    The vaccines do not contain live virus and will not cause COVID-19 disease. The vaccines are not likely to trigger an MS relapse or to worsen your chronic MS symptoms. The risk of getting COVID-19 far outweighs any risk of having an MS relapse from the vaccine.

    Any vaccine can cause side effects, including a fever. A fever can make your MS symptoms worse temporarily, but they should return to prior levels after the fever is gone. Even if you have side effects, it’s important to get the second dose of the vaccine for it to be effective.

    The vaccines are safe to use with MS medications
    Continue your disease modifying therapy (DMT) unless you are advised by your MS healthcare provider to stop or delay it. Stopping some DMTs abruptly can cause severe increase in disability with new lesions on MRI. Based on data from previous studies of other vaccines and DMTs, getting the COVID-19 vaccine while on any DMT is safe. Some DMTs may make the vaccine less effective but it will still provide some protection. For those taking Kesimpta, Lemtrada, Mavenclad, Ocrevus, or Rituxan—you may need to coordinate the timing of your vaccine with the timing of your DMT dose. Work with your MS healthcare provider to determine the best schedule for you. We are in the process of developing considerations for providers to use when making these decisions with you.
    All of us have a personal responsibility to slow the spread of the pandemic and eliminate the virus as quickly as possible
    The authorization of safe and effective vaccines for COVID-19 bring us one step closer to eliminating this pandemic. In addition to getting vaccinated, the science is settled that wearing a face mask, social distancing and washing your hands are the best ways to slow the spread of the virus and should be continued even if you get a COVID-19 vaccine.

    Learn more about the safe and effective COVID-19 vaccines from the Centers for Disease Control and Prevention.

    Jan. 15: Register for the webinar to learn more about the vaccine recommendations from National MS Society National Medical Advisory Committee Chair, Dr. Nancy Sicotte.
    Jan. 20: (En español) El Dr. Jaime Imitola estará con nosotros para compartir una guía actualizada sobre la seguridad y eficacia de las vacunas del COVID-19 para las personas que viven con EM.
    Register Now
    Individuals consulted in the development of this guidance
    The National MS Society consulted the following individuals in the development of this guidance:

    MS neurologists and experts
    Nancy Sicotte, MD, FAAN—Chair, National MS Society’s National Medical Advisory Committee, Cedars-Sinai Medical Center, USA
    Brenda Banwell, MD— Chair of MS International Federation International Medical and Scientific Advisory Board (IMSB) – University of Pennsylvania, USA
    Amit Bar-Or, MD, FRCP—University of Pennsylvania, USA
    Jorge Correale, MD-- Raul Carrea Institute for Neurological Research, FLENI, Buenos Aires, Argentina
    Anne Cross, MD, FAAN—Washington University and Secretary of Board of Governors of the Consortium of MS Centers, USA
    Jaime Imitola, MD, FAAN—University of Connecticut, UConn Health, USA
    Dorlan Kimbrough, MD—Duke University, USA
    Avindra Nath, MD—National Institutes of Health/National Institutes of Neurological Disorders and Stroke, USA
    Scott Newsome, DO, MSCS, FAAN, FANA—Johns Hopkins University and President of the Board of Governors of the Consortium of MS Centers, USA
    Penny Smyth, MD, FRCPC—University of Alberta, Canada
    Rachael Stacom, MS, ANP-BC, MSCN—Independence Care System, USA

    Staff from MS Partner Organizations
    Julie Fiol, RN, MSCN—National MS Society, USA
    Pamela Kanellis—MS Society of Canada
    Julie Kelndorfer—MS Society of Canada
    Hope Nearhood, MPH, PMP—National MS Society, USA
    Leslie Ritter—National MS Society, USA

    This guidance is endorsed by the Consortium of MS Centers and the MS Coalition members:
    Accelerated Cure Project for Multiple Sclerosis
    Can Do Multiple Sclerosis
    Consortium of Multiple Sclerosis Centers
    International Organization of Multiple Sclerosis Nurses
    MS Views and News
    Multiple Sclerosis Association of America
    Multiple Sclerosis Foundation
    National Multiple Sclerosis Society
    United Spinal Association

    Thanks again, Marco, for another informative post.

    In my state, I'm next in line to get the vaccine, due to age. Will do so when the official word gets out!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator


      Thanks Marco! I have been waiting for this from the NMSS.
      DX 01/06, currently on Tysabri


        For those that are interested, the UCSF Multiple Sclerosis and Neuroinflammation Center will be presenting their 4th Town Hall Meeting on Covid vaccine recommendations in MS patients, tomorrow at 5:30 pm PST. There is also a link to watch the other three Town Hall meetings, which were very informative. Registration is required if you wish to get access to the Zoom meeting. I receive my MS care here and the all the neurologists are great speakers and very dedicated to patient care. Here is the link:


          Thanks! Useful information, and good to know what is recommended for people with MS.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.


            I was wondering if anyone saw this article as well:


            Dx March 2018; possible first episode: August 2011
            Tysabri May 2018-June 2019, Mayzent July 2019


              Originally posted by Jennaly16 View Post
              I was wondering if anyone saw this article as well:

              A friend sent a similar story to me on biontechs's use of mRNA for MS vaccine research. I haven't had a chance to do any research on it and find more than the quick highlight reel. But that would be such wonderful news. Here is hoping it translates from mice to people well.
              DX 01/06, currently on Tysabri


                Thanks Marco for the info.

                I'm currently on Ocrevus and will need to understand the timing considerations, planning to discuss with my Neuro as well as watching for these updates.

                "For those taking Kesimpta, Lemtrada, Mavenclad, Ocrevus, or Rituxan—you may need to coordinate the timing of your vaccine with the timing of your DMT dose. Work with your MS healthcare provider..."


                  Just saw my Neurologist yesterday. Ocrevus infusion next week so he recommends waiting 4- 6 weeks post infusion for COVID 19 vaccine. At the absolute minimum (if other circumstances are in play) wait at least 2 weeks!!


                    I’m heading for my Ocrevus tomorrow morning. My neurologist said I could get the vaccine in three months. Sounded like they might even schedule it for me. Before he said four weeks after or before
                    but maybe now he’s got new information to go by ?
                    It was one agains't 2.5million toughest one we ever fought.


                      Thank you - sounds like we can all rest easy that our MS status does not change anything in regard to taking the COVID-19 vaccine.
                      All the best, ~G


                        Originally posted by gargantua View Post
                        Thank you - sounds like we can all rest easy that our MS status does not change anything in regard to taking the COVID-19 vaccine.
                        Woops, I wanted to add something else. My neurologist told me that being on Ocrevus does not increase your risk of problems with the vaccine, but that the reason for waiting 4-6 weeks is to ensure the vaccine is most effective.

                        All the best, ~G


                          I got my first dose of Pfizer yesterday! I am on Mayzent. No major side effects! I did have some MS type things (some numbness in my legs and hands) and was tired however i don't know if i can say it's MS specific. I've heard a lot of co workers say they were very tired after their first dose. Plus it's really cold where i live which effects me too. I was so excited to get it yesterday!
                          Dx March 2018; possible first episode: August 2011
                          Tysabri May 2018-June 2019, Mayzent July 2019


                            Jennaly16 - glad to hear you only have minor side effects. Hope they are short lived. Really glad you will have that protection!
                            DX 01/06, currently on Tysabri


                              That’s, Marco for the wonderful valuable information. I can’t wait to get vaccinated. Been in quarantine since last February because I am high risk.

                              Right now my state is vaccinating health care workers first. My caregiver managed to get her first shot. So possibly family members who are performing the caregiving role will qualify, also.

                              I read a lot about the way the vaccines from Pfizer, Moderna and Astra Zeneca were developed and I have complete trust in them. The Johnson and Johnson one I don’t feel comfortable with.

                              we will see how this all evolves.