78 Comments
Oct 9, 2021Liked by Gavin Giovannoni

I had never heard of a third dose until I read this. Unfortunately when you only get ten minutes ,once a year on the telephone with your consultant , it is impossible to have any of this information. I had to hustle the GP to get the second dose of the vaccine prior to my last infusion of Ocrevus in April otherwise both would have fallen around the same time. I only did this as I had read information from the International MS Federation. Someone who doesn't actively try to keep up with the latest MS information would have no chance of having vaccines at optimal times as one part of the NHS doesn't talk to another. I enjoy reading your newsletters, lots of good information but hard to put into practice within the confines of the NHS.

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Oct 9, 2021Liked by Gavin Giovannoni

This is amazing as always- it’s been impossible to get advice on this from other sources and I am especially impressed and grateful that you have been willing to stick your neck out when there wasn’t much data to say this is what there is and what I think. The MS community really needs this kind of support.

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Oct 21, 2021Liked by Gavin Giovannoni

Hi Dr Giovannoi, a bit of a complicated question that's very specific to my situation. I had about 150mg of Ocrevus (a quarter of the full dose) as I was pulled off the treatment due to a reaction, am due to start Kesimpta soon. I had my third jab a few days ago just over 14 weeks after that infusion, I am still waiting to be moved to a new treatment. I was fully vaccinated prior to starting Ocrevus. I'm just wondering what that means for my immune picture as I've been unable to find answers? My assumption is because of the small dose and vaccination prior to starting I would have mounted a good response, but very unclear on how that would work. (team have assured me 150mg is still protecting me in the short term whilst we wait to move to Kesimpta, which should be very soon.)

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Oct 20, 2021Liked by Gavin Giovannoni

Sorry I’m very confused. I have just had the booster jab this week and i am on ocrevus. So do i still have to have a third primary covid vaccine ? Can i have it if i’ve already had the booster jab?

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Oct 11, 2021Liked by Gavin Giovannoni

Prof G, I am intrigued by your ecplanation of immunology 101 and why the flu vaccine works different with Ocrevus-users then the covid19 vaccine does.

How does this work when one DID have an antibody response to the first and second vaccine (AZ)? I postponed my Ocrevus in spring and received my vaccinations 7 and 10 months after my last Ocrevus infusion. Tests showed I did have an antibody respons. 5 weeks after my 2nd vaccination I got my new Ocrevus infusion. Now, 3 months after the infusion, I am bound to receive the invite for my third vaccination (‘Cormyaty’, or Pfizer).

Does this mean this third shot will act the same as a flu vaccine for me, as I did have a response before so I might have some ‘memory b-cells’? Or is this too simple a thought?

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Oct 10, 2021Liked by Gavin Giovannoni

Prof G sorry to repeat myself but is it ok to have flu vacc just a few days (<7) before Ocrevus? As otherwise you suggest waiting three months and my son’s next infusion is on Thursday. I’m now wondering if should try and get his flu vaccine ASAP tomorrow but worried that’s too near to the infusion?

This is such a minefield and two hours on the internet have provided every single variation of answer I could imagine without any clarity at all.

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Oct 9, 2021Liked by Gavin Giovannoni

Thanks you for a really useful post. I was not aware of REG-COV or Monupirovir. This is very interesting and an important step forward in the treatment of Covid. Do you think the pandemic will be over soon? It seems that the virus is always one step ahead. Is this going to be like HIV which is no longer a death sentence because it's now treatable?

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Oct 9, 2021Liked by Gavin Giovannoni

Thank you. I appreciate you so much!

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Oct 9, 2021Liked by Gavin Giovannoni

Thank you Prof G! I got a third jab 3 months after last Ocrevus infusion as that was the “guidance” I gleaned back in early Sept when it was offered. My neuro’s guidance was that he did not object. Wish I’d had this information a month ago. Oy vey…

Now I’m searching for how to get an immunity test - the hunt is real! US based here

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Oct 9, 2021Liked by Gavin Giovannoni

Hi Dr. G. Thanks for the post. It was very informative in an area that is often very gray. I was wondering if you have any information you could direct us to around vaccinations outside of flu and COVID-19. For example, anything around removing immunity from vaccines you've had as a child (chicken pox etc), as well as potentially vaccines you might take during Ocrevus like HPV? Thanks!

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Oct 9, 2021Liked by Gavin Giovannoni

Hi

" The latter is my current advice for older patients and those with comorbidities who are at high risk of getting severe COVID-19. These people need as much anti-SARS-CoV-2 immunity as possible to protect themselves from getting severe COVID-19 during the pandemic, i.e. in the next few months before the pandemic abates. In younger patients at very low risk of severe COVID-19 optimising their immunity now is not that important and they can probably wait for the booster."

Where you talk about all the patients with comorbidities are you referring to those on ocrelizumab or those people including those on no DMT?

Also the recently approved treatment you mentioned which you say should be available to immunosuppressed Ms patients should this also be available to Ms patients who are not immunosuppressed but are are more progressed and therefore vulnerable?

Many thanks

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Oct 9, 2021Liked by Gavin Giovannoni

Thanks so much for all this info, it is so helpful and great of you to share it with us. I don’t think a third dose is on offer here but in any case it is almost 6 months since my second dose of Pfizer/Biontech. I delayed my last infusion and got my first vaccine 7 months post treatment but I still didn’t make any antibodies. My main concern with Covid (other than obvious hospitalisation and death) is that it will set my rehabilitation back by months if I get it. I have worked so hard to get from using a wheelchair to walking pain free and the slightest thing can throw me right back. I was considering delaying my next treatment again but other than my first two doses of Ocrevus each of my infusions has been 10 months apart because of Covid and I’m worried this will effect how it works!? I feel so good on this treatment but the Covid anxiety and isolation is tough.

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Hi Dr G !! I have MS and I can't thank enough for all your work with us, pwMS!!

In my case I was treated with alemtuzumab in fev/2019 and fev/2020, currently with low levels of B and T cells (<600), i had 2 doses in July, after each dose my tyroide function went nuts, I am now being treated to control tyroide function (hyper).

Should I test my antibodies response prior to a 3rd jab?

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founding
Oct 9, 2021Liked by Gavin Giovannoni

Extremely helpful post. Thank you for all that you do for this community.

Question: is it safe to have a flu vaccine a couple days before a Tysabri infusion?

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Oct 9, 2021Liked by Gavin Giovannoni

Thank you so much. This blog really is so empowering. First ocr last week so presumably will follow the booster timing advice - am only eligible for booster, not third primary.

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Oct 9, 2021Liked by Gavin Giovannoni

Can I clarify with the flu jab and Ocrevus- if best to be 3 month post infusion but infusion due in less than a week so that would mean flu jab in January essentially missing the worst of the season, is it better to have it now and is < 7 days acceptable?

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