59 Comments
Dec 18, 2021Liked by Gavin Giovannoni

Hello Professor Giovannoni, regarding your comment about being on the shielding list, should people on Ocrelizimab be on the shielding list?

I ask because I have never been asked to shield. I contacted my GP surgery when the government announced that more people were being added to the list and letters were being sent, and was told they don't add people to the list. I then contacted my MS nurse and was told that I should avoid going to the shops and follow social distancing and hand washing, but no need to sheild. My neurologist also listed obesity on my record so was surprised that I wasn't on the list, I am 49 too, so perhaps considered less of a risk.

I had my 3rd vaccine on the 1st October, which I only got as I challenged the advice I was given not to delay my infusion for the covid vaccine , my next infusion was due that month too. The Royal London then booked me in for my last infusion on the 7th December. I understand that I should now have a 4th vaccine (booster) 3 months after my last which would be the 1st January, but that would be 3 weeks after my infusion. I'm not sure on the time delay between infusion and the booster. Do I need to leave a bigger window or is it advisable to get this done as soon as possible around the 1st?

Having read a previous article of yours I have bought an oximeter, so thank you for that.

Kind regards

Rachel

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Dec 18, 2021Liked by Gavin Giovannoni

I just recovered from covid. Inevitable. Everyone in London I know has it right now! Luckily it wasnt as bad as I thought it would be considering no vaccine response and I think I got away pretty unscathed. Apart from my neck glands are bloody sore still, 2 weeks on.. Now I’m wondering, I guess I’ll have some antibodies. How long will these last for? I read on gov website something like 90 days? Booster due in Feb due to timing with next Ocrevus infusion (to be delayed..) . Am I likely to get reinfected like, before 90 days? Is that possible?!

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Dec 21, 2021Liked by Gavin Giovannoni

I had a Hot MS clinic appointment yesterday re a suspected relapse. The neurologist I saw told me that the data for Ocrevus and covid is being monitored for quite a while now and it’s looking very good. She encouraged me to go back on to Ocrevus. I’m really confused about this.

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Dec 19, 2021·edited Dec 19, 2021Liked by Gavin Giovannoni

Hi Dr G,

Hope you are safe and well. Thank you for an excellent update. I was hoping you could clarify for me: are *all* pwMS eligible for these new community based treatments should we contract covid? I am not on a DMT at present, as my Neurologist took the decision to hold off on starting Rituximab until things improved with the pandemic. The MS Society website seems to suggest we are all eligible based on our diagnosis of MS but I wasn't sure if that alone classified us as vulnerable. I wasn't added to the shielding list before, so I am not sure. I live in Scotland.

Many thanks,

Jen

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Dec 19, 2021Liked by Gavin Giovannoni

What I am totally confused about is why all countries are not treating and vaccinating people the same way. Here in the USA, if you had the first 2 jabs of Phizer or Moderna vaccine you were considered "fully vaccinated and had to fight to get a 3rd "booster" shot. The 3rd shot of Moderna here is a half dose. I had the Phizer so I got a full dose on the 3rd shot. Now in a few months if i went to get a 4th shot, they would turn me away. At least as it stand now because that's how its set up up here right now. There is no 4th shot as a booster thing.. They are saying the 3rd shot is the booster. If "they" decide we will need an annual shot to keep the immunity levels up then that will be "their" choice, not ours.. I don't understand.

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Hi, I would be very grateful for your advice. I last had an Ocrevus infusion in March, and had my first 2 Covid vaccines in January and February, with a 3rd in September, and am due to have a booster at the end of December.

However, I am 11 weeks pregnant and know that I am at risk of more severe Covid as a result…and that I probably don’t have any antibodies from the vaccine doses so far. If I were to get Covid am I right in thinking that the anti viral sotrovimab would be option as it has been used for pregnant women in other countries it looks like? How would I be able to access this medicine if I needed to…would I have to make sure I had highlighted the potential of this scenario to my GP prior, or is it something my neurologist at the Royal London would be able to arrange?

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Dec 18, 2021Liked by Gavin Giovannoni

I have SPMS,have had two jabs ( feb and may ) feel that I have gone downhill after each jab and late October have had a relapse and not got better ( my first in many years). Ten days ago I got COVID ( moderate) am anxious about having the booster as I can’t imagine being worse than I am now.( balance issues,weakness brain fog, fatigue weakness etc ) will the fact that I’ve just had COVID, ( sure it was delta due to lack of taste and smell )protect me from omicron ?

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Dec 18, 2021Liked by Gavin Giovannoni

On ocrelizumab and i am afraid i can only get one booster as the vaccination program is terrible in the Netherlands. I timed my irst 2vjabs well and got some antibodies last august. So It made sense ti me to plan my booster for my infusion in February. Now I am in doubt even about taking ocrelizumab as this seems to do nothing for my non active ppms. Is there any stuff out there on declining antibodies after being vaccinated with AZ?

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Dec 18, 2021Liked by Gavin Giovannoni

Thank you for this. We are getting no advice regarding Covid-19 vaccines and anti-CD20 treatment from our local MS clinic--so much appreciated.

A question from my PwMS: he would like to know if getting his Ocrelizumab infusion itself lowers his immune system's ability to fight off Omicron or other variants and should one delay treatment for that reason if one has been receiving Ocrelizumab for more than 2 years?

My PwMS managed to get his third full Covid vaccine (Moderna) this month at 7 months after his last infusion and is currently scheduled to get his next infusion in January at 8 months since previous infusion. Would there be any protective value in delaying the infusion further? We are currently have an outbreak of Omicron in our area.

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Dec 18, 2021Liked by Gavin Giovannoni

Fantastic update as always however could you answer a few questions for me.

You mention Oral Molnupiravir (Lagevrio) as being still fairly effective and being dispensed by GPS in the community but they recently approved and more effective

sotrovimab (Xevudy is accessed how? You say it is very effective but is that only offered once in hospital or is it again set to be dispensed within the community by a GP?

As a wheelchair bound woman with progressive MS who relies heavily on their partner as an unpaid carer would a carer be eligible for all these treatments?

Finally regarding South Africa, while you say they are a younger population hence why they are dealing with omicron better, are there not a lot of people with HIV therefore immunosuppressed?.

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Dec 18, 2021Liked by Gavin Giovannoni

Important information, thank you!

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Dec 18, 2021·edited Dec 18, 2021Liked by Gavin Giovannoni

It's been 8 months since Covid-19 infection (mild case), 5 months since Astra-Zeneca vaccination, and 6 weeks since rituximab infusion.

The Covid and the vaccination were over a year after the previous rituximab dose, so there was a vaccine response.

A Pfizer vaccine booster is available now: Will it be better then to take it right away? Rather than delaying till cd-20 reconstitution.

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Dec 18, 2021Liked by Gavin Giovannoni

I've now had 3 covid vaccines but still no sign of b-cell antibodies. I delayed my 4th ocrevus infusion in October and, on the advice of my neurologist, I am now set to have it on the 30th December. I'm really concerned - do you think I would be better delaying this?

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Dec 18, 2021Liked by Gavin Giovannoni

Hello Prof - are there any studies yet regarding breakthrough covid of vaccinated CD20 patients?

do you think that a 3rd pfizer jab protects more than just two when we talk about t-cell shield? thought that t-cell last much longer - are they „higher“ primed by the 3rd shot?

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Dec 18, 2021Liked by Gavin Giovannoni

What is your advice re a 4th dose - do people on anti-CD20 count for this?

My ‘booster’ (so my third dose) was on Sept 20th so I think I’m eligible for my 4th now

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Dec 18, 2021Liked by Gavin Giovannoni

Prof G, I know it is not related to this topic and about what you have recently written. But I would be indeed grateful if you could please answer it.

Is an atypical bilateral TN related to MS for a young subject? Could be because of a neck herniated disc or pinched nerve in neck? After lifting weights, the feeling gets too bad (not due to heat).

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