#MSCOVID19: yes, have the vaccine

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Barts-MS rose-tinted-odometer: ★★★★★

Despite the long blog post that I called CATCH-22 I am still getting numerous emails and questions from patients with MS about whether or not they should have a COVID-19 vaccine.

YES, you should have the vaccine when it is offered to you. Clearly, timely access to the vaccine will depend on where you live, how vulnerable you are and the local, regional and national guidelines in place in your own country. 

The benefits of COVID-19 vaccination is time-sensitive and if you wait to be vaccine-ready you may inadvertently acquire the coronavirus infection and become really ill or when you are vaccine-ready the pandemic and the at-risk period may have passed. 

In my opinion, some immunity is better than no immunity and the blunted vaccine immunity on some DMTs may be sufficient to prevent you from becoming infected with SARS-CoV-2, developing COVID-19 and more importantly developing severe COVID-19. 

Are the vaccines safe? No vaccine is 100% safe, but the fact that the regulatory authorities have licensed these vaccines indicates that the benefits of the vaccine far outweigh the risks associated with the vaccine in the general population. At the moment the only relative contraindication to the Pfizer-BioNTech RNA vaccine is a history of severe atopy or allergies, i.e. people who carry around an epi-pen to prevent anaphylaxis in response to an environmental allergen.  

If you have any questions please read the CATCH-22 blog post, and our new advice here. If these don’t answer your question(s) we will try and address them below.

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Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

46 comments

  • If ext Ocrevus due start of March (2nd one)
    Which may coincide with roughly when someone might called in for vaccine

    should they have either

    both

    or what?

    • That’s a really good question actually. If you manage to catch the “bit before next ocrelizumab infusion” – how long AFTER the vaccine should we wait before having ocrelizumab.

      I’m under the impression that a few weeks one way or the other doesn’t make that much difference with ocrelizumab, but it can make a difference for your immune system. So I reckon if you had the vaccine you should probably wait 4 – 6 weeks before ocrelizumab if you can – but it’s not the end of the world if you can’t. If that makes any sense… Covid-19 can kill you or make you extremely ill for an extremely long time. Whereas MS is just the “usual grind” we’re all kinda used to.

      I was encouraged to wait 6 weeks from my flu jabs till my first ocrelizumab treatments – it was explained that the time was needed for the immune system to fully learn what it needs to learn before it’s clobbered by the ocrelizumab, My guess is it’s the same or similar for the Covid jab.

      But I’m not a doctor – it’d be interesting to hear ProfG’s take on it.

    • Same question here and same possible issue. Delay ocrevus? That would mean at least a 3-6 week delay. Or delay vaccine to a few weeks after infusion?

    • I am not sure where you live, but I would take whichever option comes up first. If it is the vaccine you will need to delay the next ocrelizumab infusion for at least 4 weeks after the booster or second dose of the vaccine to allow for an adequate immune response. If you have ocrelizumab first you may want to delay the vaccine until ~12 weeks after ocrelizumab based on the VELOCE study data. Or you can just go ahead and have the vaccine and rely on the immune system to see the immunogen and mount an adequate cellular response.

      This question is an example of why we need Roche and/or the MS community to set-up studies to answer this question.

      • Is there a way to test if vaccine was able to generate cellular immunity for covid and also for other diseases?
        Thanks for your advice and for keeping us up to date and keep recovering well!

      • What are your thoughts now that the vaccine dosing interval has been extended to 12 weeks? I’m due my next ocrelizumab next Tuesday but have now been offered the COVID vaccine on Monday. However, nobody can tell me for sure when my 2nd jab will be administered. If it’s the 12 weeks, will that mean pushing my ocrelizumab back by 18 weeks to allow for 6 weeks after any vaccination. Alternatively, could I have the vaccine on Monday and then ocrelizumab in 6 weeks followed by booster vaccine 6 weeks later so 12 weeks after initial dose. Am I overthinking things though? My MS nurse couldn’t really help except to discourage the 12 week gap between the vaccines disrupting my infusions.

        • I am not sure why it is 6 weeks from vaccination. If you were starting you would get second dose 2 weeks on and 6 weeks from start would be 4 weeks from last infusion.

          • My understanding is that both the Pfizer and Oxford vaccines are now given as first dose and then a second 3/4-12 weeks later. Hence my query about timing my ocrevus. My neurologist’s advice is 6 weeks before or after but that was before knowing about the lengthy interval between vaccines now. It’s unfortunate for me that both my first vaccine and next infusion are both being offered next week.

        • Yes, the NHS started before Christmas. As I am stuck at home doing rehab I can’t necessarily justify being a high priority, but I may have to get back to work sooner than planned as there is a staffing crisis at our hospital in relation to COVID-19. As long as I can walk and hold my head up for a few hours at a time I will be able to help out on the wards.

          • Prof G,
            No, no, no! Stay home and rehab and HEAL! Do Not Go to Work. They will be OK!
            We all need you healthy, only way to be heal is to take care of you know who, YOU as you know already! Dr ‘s orders, STAY HOME! You almost died, your body will improve much quicker if you stay home, get the vaccine and come right back home. You will be back to the grind when your body is healed properly, one fall or infection or ??? could stall the recovery or worse. The Powers to be knew the Covid winter wave was gonna be a HELL, they need to step up , not YOU.

  • Thank you for info
    Could you please advise regarding the Oxford vaccine
    I know MD on your blog initially said to avoid the Oxford vaccine and my own neurologist has said preferably avoid the Oxford vaccine which is concerning when you are not in a position to choose.
    Is the Oxford vaccine safe or do we not know yet as the results have not been published?

    • Re: “advise regarding the Oxford vaccine”

      As soon as we hear from the MHRA I will post on the Oxford vaccine. I don’t want to second-guess the regulators.

  • I was supposed to start Ocrevus in the new year following Natalizumab JC+ test. Is it best to wait and for how long after I get the vaccine?

  • On another platform (Facebook), I was asked by some pwMS to share my response to a specific question, so I am sharing it here, as well:

    Question:
    Hi Dr. Kantor. There is much talk on the MS boards about the Covid vaccine working through B cells and the MS drugs having shut down B cells. Much lay person speculation. Do you have any resources for accurate info? Mitoxantrone and Ocrevus get much of the attention. Thank you! 😎

    Answer:
    1. There is a lot we don’t know. For us to pretend otherwise, is a mischaracterization of our knowledge base.

    2. Mitoxantrone is hardly used in the US due to the risk for lymphoma and the time limited use due to dose-dependent cardiotoxicity.

    3. Ocrevus is used by a lot of pwMS, and widely prescribed by neurologists, and the data thus far suggests that it is the MS medication that we should be most concerned about during the COVID-19 pandemic. By depleting B cells, Ocrevus may make a person less likely to mount an effective immune response to SARS-CoV-2, and a vaccine may be less effective in people on Ocrevus.

    4. Although I speculate that pwMS on Ocrevus will not be as protected against infection after the vaccine, there isn’t a reason to think that the vaccine would be more dangerous than in other people. Therefore, it probably makes sense to get vaccinated, because even a small reduction in risk is valuable.

    5. People on Ocrevus who are vaccinated could still be at trial for infection, and hence transmit SARS-CoV-2 to those not vaccinated (or even to those vaccinated since no vaccine is completely protective). The caveat to this is that there will be side effects from these vaccines (as with all vaccines), and these shouldn’t be ignored, but reported and studied adequately.

    #COVID19isCHRONIC
    #TOGETHERweCanDoBetter #1MisSion1community

  • If my Ocrevus infusion is due in early March, when is the latest I should take the vaccine before the infusion or the earliest after the infusion?

    • There is one advantage to advanced years – I had the Pfizer vaccine last week in a safe setting with NHS staff, and you get to sit down for 15 minutes after in case someone has a reaction to it (nobody did). For many it was quite an emotional event and we all thanked the workers.

      Moderate effects for a couple of days as expected (sore arm but no swelling, some fatigue and spasticity – the latter very similar to when I’m starting a cold) then back to ‘normal’. Looking forward to the second dose and an end to a fear of strangers.

      Hope it comes to you all soon.

      To a better New Year.

  • Sorry prof usually irrespective your views but recommending taking a drug with no known long term effects is irresponsible. Having MS makes me no more vulnerable than a normal healthy person, and given the NHS stats which state that just 377 healthy people under 60 have died of Covid, there is noway i will be taking it without long term saftey data.

    • Interesting position. Not sure if you are aware that more people have had the first dose of the Pfizer vaccine than any specific licensed MS DMT.

      It is important to remember that having the vaccine is more about population, than individual, health; if a significant number of people refused the vaccine then that number of 377 is going to a lot higher.

      • “…more people have had the first dose of the Pfizer vaccine than any specific licensed MS DMT,”
        Really good way of putting it in perspective, and by the time most of us get the vaccine the numbers of people already vaccinated will be in the millions

    • Something to ponder: You say 377 healthy people died under 60 y/o per NHS stats, if true. Not all about deaths.

      What about Covid post collateral damage, 100’s of thousands of healthy people around the world are saying they Experience Severe Symptoms post Covid Infection from Mild cases, the damage may last for months or longer. Many say “Covid Hell”.

      How many healthy people were intubated for long periods in the ICU, then survived, a Very Long Rehab in their future, if awake.

      Only a fraction of the population was infected prior to today, let us look back April 2021 to ponder more stats. Many more reasons to be vaccinated than dying or suffering post covid, a game of Roulette, I don’t want to play. You may be infected then silently pass on infection if not vaccinated as well as you know.

      I say Vaccinate, if not allergic history, if your Dr approves. One key many forget from my Experiences, never vaccinate if sick with infection, for example a mild cold or any infection, then vaccinate when resolved. Good luck, stay safe.

      • There is plenty of evidence demonstrating long term issues following COVID exposure. Plenty of reports of Guillain-Barré Syndrome and lung damage. Jump on Google scholar and have a read.

        • Not to mention biochemical signals for other longer term issues such as diabetes and even potentially Parkinson’s Disease.

  • I’ve read that some neurologists are recommending a temporary hold of Mayzent to allow the immune system to recover enough to create antibodies. Is that necessary in your opinion?

    • People infected with COVID have nmade an antibody response (fingolimod) but it may be abilt blunted, However you need to be very careful such that rebound reactivation does not occur.

      • Thank you for the reply. Seems like a double edge sword. Risk a blunted antibody response or risk rebound of MS by holding Mayzent. Do you have any experience with the rebounding of MS symptoms and how quickly it can occur after stopping?

        I think I’d rather risk a blunted antibody response.

        • No experience i am not a neuro but matzant has a shorter half life than fingolimod and so risk of reound will be quicker mayzant half life 30hour fingolimod 4-9 days

        • Re: “I think I’d rather risk a blunted antibody response.”

          In general, with the S1P modulators, I would suggest risking a blunted antibody response to a COVID-19 vaccine rather than MS rebound. MS rebound can be quite severe and not all pwMS make a full recovery from rebound; there have also been a few deaths reported as a result of MS rebound.

  • I’ve read the study by Pfizer. I’m convinced that it is safe for the general population.
    I’ve read meta-analysis and aggregate data on vaccines and MS, and I’m convinced that PwMs on DMTs are safe to be vaccinated.
    While I was on DMTs, I had several vaccinations myself.
    And in this instance, vaccination is more important than ever (obviously).
    I still have one question:
    -the (Pfizer) vaccine expands CD4+ T and CD8+ T (memory) cells
    -DMF, the DMT I used for nearly 6 years, causes reduction of CD8+ and CD4+ T cells (correlating with ALC), and affects memory cells more than naive cells
    I recently quit DMF, and I’m not planning on getting another DMT (soon).
    Reading about the (apparent) opposite action of the vaccine and DMF, and not having the ‘protection’ offered by DMF anymore, makes me hesitant.
    As a I explained above, I’m probably what you would call a ‘pro-vaxxer’. I would really appreciate if someone could take the time and effort to indicate why I’m wrong about the opposite action of the vaccine and DMF (because I honestly hope I’m wrong). Just saying ‘don’t worry’ isn’t doing it ;-). Aggregate data are nice, but they don’t discriminate between people on and off specific kinds of DMTs.
    Thank you beforehand!

  • Probably a stupid question, but something i have been wondering about re the vaccine, any clarity would be greatly received.

    In the absence of a covid test prior to vaccination, if a person were to be asymptomatic or pre symptomatic for COVID, and then vaccinated, how would this affect them?
    I was recently getting my dogs kennel cough vaccine renewed, and the vet said wait at least 2 weeks from the potential exposure to make sure we didn’t make him sick with a vaccine whilst his system was already mounting an immune response. Would the same apply to humans and COVID vaccine?

  • Global cases of HIV = 38 million…..global cases of MS = 3 million.

    Found this article about an individual who advocated to get immunocompromised HIV patients included in the phase 3 COVID vaccine trials. Data is yet to be released.

    https://www.nbcnews.com/feature/nbc-out/inside-fight-include-hiv-positive-people-covid-19-vaccine-trials-n1252458

    It would be nice if the MS community could advocate for the same inclusion and data, re vaccine safety and efficacy. Appears MS is still considered an orphan disease.

    I suspect the MS pharma machine does not want to know the answer. At least we should be able to extrapolate the results from the HIV patients in the trials and apply them to MS.

    It is just very frustrating that the only data we have for MS and COVID vaccines is based on extrapolated data. If the MS medical community wants high inoculation then we need MS specific safety and efficacy data, ASAP!!! Reading personal anecdotal vaccine stories, posted online, is not sufficient.

      • Good to know, thanks MD. I am surprised there is not more data to be mined in the RA population, unless they were also excluded from the studies.

      • The concern is response in immunosuppressed people people not on DMT are probably not immunosuppressed…However just cos you have HIV does not mean you are immunosuppressed it depends on your cell counts

        • if the concern is response in immunosuppressed people, the concern is limited to people on DMT – if the concern is response in Pwms, the concern is broader than just immunosuppressed people…

          • There is no reason why a pwMS is different from a pwoutMS the broader whole were we have a knowledge gap is immunosupressed people e.g. MS, cancer arthritis etc

  • I am taking the shot for MS called Copaxone. How would that react with the Covid 19 vaccine and should I take the vaccine if offered?

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