To be vaccinated or not?

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The following is a preliminary summary of the UK MS Register’s survey to establish how people with MS (pwMS) viewed the arrival of the COVID-19 vaccinations.

Importantly, the data shows that despite being quite vocal the anti-vaccine message doesn’t seem to be having the same effect in the UK as it is in other countries. Fewer than 6% of respondents said they would probably or definitely not be having a COVID-19 vaccine. In comparison, almost 95% of respondents would definitely, probably or possibly have the vaccine.

Are these results consistent with your own attitudes to the vaccine?

As the survey is still active so you can take part by signing up or logging in to MS Register.

CoI: multiple

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The MS Bloggger

25 comments

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  • I want to get the vaccine. I’m a health care worker (not frontline but I do have patient contact in a hospital setting) I had Lemtrada round 3 a year ago. I’m worried that if I get an immune response to the vaccine and relapse how are they going to treat the relapse? High dose i.v steroids will this leave me vulnerable to Covid. And if we don’t develop an immune response is a little protection better than none at all.

    • There is no reason why someone treated with alemtuzumab in the past who has good immune reconstitution should not respond to the COVID-19 vaccines.

      • remember the person who was infected proably during the infusion they made an antibody response and remember that obver 85% o people make an anti Drug response within the first three months so should be a good sign for making an anti-vaccine response

  • I want to get a vaccine. I just worry about the fact dat mRNA vaccines have shown much greater ability to induce CD4+ and CD8+ T cell reponses than other vaccine formats (e.g. inactivated pathogens). Evidently, this is good news for the general population, but maybe less so for people predisposed to autoimmune reactions, like pwms, especially if they are not under treatment. I would really hope to get some clarification on this, but my guess is this question will not get a response…

    • Re: …like pwms, especially if they are not under treatment …”

      Unfortunately, there is no data available to answer this question. Hopefully, national registers that will automatically track COVID-19 vaccinations and complications (e.g. Sweden) will be able to answer this question. But by the time the safety data emerges the pandemic is likely to be over.

      • Re prof G : “Unfortunately, there is no data available to answer this question…”
        Thank you very much Prof G for your answer! I realise waiting for data is not an option in this situation (and I will probably end up taking the vaccine). But it’s nice to get some feedback.

      • So if the vaccine is only 95% effective at preventing severe Covid…… will the vaccine act quickly enough to eliminate the virus before it gets into the brain? Particularly if efficacy might be blunted by a DMT?

        Because it does seem to appear the virus gets into the brain, based on some accounts of “long covid” symptoms.

        This virus is scary for sure!

        • In the oxford trial I dont think there were any severe covid but as you talk about 95% effective you are talking RNA vaccine and probably the moderna vaccine as they reported on a few severe cases.

          If you have high titre of antibody as a result of vaccination you should get rid of it before it reaches the brain, but there was recent paper last week questioning whether the virus actually gets into the brain as the major pathology is with the blood vessels in the brain. so you get jello blood vessels.

          Vaccines reduce risks of :dead, hospitalization, long covid, infecting someone simply because you get rid of the virus quicker if you that effect is reduced it still works quicker if you have some form of vaccine response

  • Fantastic news, well done pwMS in GB 😁
    Vaccination is so-ooo important!

    1. On a personal level. Even if you suspect your response may be blunted eg by your DMT or older age, the response made will likely/hopefully prevent you getting severe covid.

    2. Even more important, on a population level. You are helping remove the virus from circulation so that people who fail to respond, or unable to receive the vaccine have reduced chance of being infected. Imagine a patient receiving high dose chemotherapy, life is bad enough without contracting covid and having little chance against it.

    As I understand it, timing may be important for vaccine doses and some DMTs. Lots of information on this blog thank you 🙂

  • I am lucky enough to have had both doses of the Pfizer vaccine and I am on ocrelizumab.

    I am hoping that my experience will assist research so that we have actual data to learn from

    So far happy to report I had no reaction to either dose. Interestingly, of my colleagues who had the vaccine and had previously had covid themselves, a larger proportion had reactions (mild – aches, temporary fevers etc) . I found that interesting!

    I do have one question – I’m assuming my antibody response will be suboptimal because of the anti-CD20 but I (think I) understand that vaccines produce T cell responses too. Should my T cell response not be adequate?

    Thanks for the survey above. Hope everyone is keeping ok

  • I hope to have the pfizer/BioNTech vaccine as I can’t have the Oxford one. I am in group 6 though do you think stocks of that one will last that long?

  • Why is infection damaging to someone with progressive MS whilst the immune response to vaccination is not?

    Is the immune response to vaccination also damaging, but just nowhere near as much as the infection?

    • The infection is not necessarility damaging a it is unlikely to affect your MS, but progression and disability carries more risk of hospitilisation and death if you catch the virus. The immune response to the virus should not affect your immune response to MS is a positive or negative way, but it will reduce your risk of hospitalization and death if you catch covid -19 and may reduce the risk of you becoming symptomatic if you catch the virus

  • Anyone know if natalizumab, which binds to T cells, will disable response to the vaccine? And like the flu vaccine should timing of receipt be a factor? I’m told to get flu vaccine midway between treatments if possible.

  • Anyone know if natalizumab will affect T cell response to the vaccine? Also any thoughts on vaccine timing, should we aim for midway between treatments?

    • The cells going into the lymph glands, where a vaccine response will form use a different homing receptor (CD62L) compared to that block by natalizumab (CD49d) so no major reason why natalizumab should affect this, but we need the data to be definative, therefore timing should not be so important. p.s. I am not a neuro

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