28 Comments
Nov 26, 2021Liked by Gavin Giovannoni

31 new spike proteins! I hope your folks are keeping safe in the face of this new challenge.

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Living in UK, receive Ocrelizumab from Sheffield Teaching hospital &

LOVE reading all your contributions, news etc Always I try to share and applaud your effort to enlighten all PwMS. 👏

But after having signed up to pay annual subscription of $99 (despite my nil income); I’m left frustrated. Why? I can not create a personal sign in link… despite trying repeatedly.

Please help. Thank you.

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Nov 26, 2021Liked by Gavin Giovannoni

I'm on ofatumumab, and I took a 118 day break from it to get vaccinated after being on it for for 7 months. After my 2 doses of Pfizer, taken a month after starting the break and then 3 weeks later, my antibody count was very low, but measurable: 9.5U/ml. My B-cell count was also very low, but measurable: 4cells/μl. 40 days after jab 2 I got a third dose, and 3 weeks later my anitbody count was >250U/ml and my B-cell count was 17cells/μl.

I then decided, based on this information to continue my ofatumumab treatment, but dosing 12 weeks apart, instead of 1 month. 79 days after restarting on ofatumumab I tested again, and found that my antibody count was still >250/ml and my B-cell count was 6cells/μl.

So for myself I know that the third dose was effective, and I feel that my ofatumumab regiment is effective enough. Recent MRIs were unremarkable.

I plan to get my booster in January, six months after my 3rd dose, and 10+ weeks after my current injection of ofatumumab. I believe my data suggests it will also be effective in boosting my immunity from COVID-19.

Going forward, my main question is whether I should stay on an immunosuppressant, or find something that puts me at less risk. I am hoping that maintaining a low B-cell count, if not a zero count, is a good strategy to minimize my risk, and prolonging how long ofatumumab can be effective for me.

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founding
Nov 26, 2021Liked by Gavin Giovannoni

Reflecting on this, it changes little for me. Thanks to ocrelizumab, I didn't get any antibodies from first two Pfizer doses and rather doubt the 3rd one did any better (we shall find out next week...) so pretty much stayed home anyhow. At least now I got a good excuse...

Main difference is probably the risk that ronapreve would be less effective in case of infection.

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Nov 26, 2021Liked by Gavin Giovannoni

“I am therefore advising all my patients to get their 3rd dose ASAP as it is part of the primary vaccine” could you please clarify if this is all patients with MS or all patients on certain medications causing severe immunosuppression or all patients on meds that cause any immunosuppression? The guidance so far seems to me only to apply to those severely immunosuppressed needing 3rd dose?

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Nov 26, 2021Liked by Gavin Giovannoni

I stopped taking Fingolimod a month ago and am awaiting Ocrelizumab.

I had the second dose of the Covid vaccine a few days ago (I had covid in January, so at the moment only two doses) and now I have to wait 4-6 weeks before starting Ocrelizumab (however my lymphocyte levels are not enough).

I will start therapy in early January (2 months after the discontinuation of Fingolimod), but I am afraid of any relapses in this transition period. Are there any concrete risks?

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Nov 26, 2021Liked by Gavin Giovannoni

Thank you for this! Very useful and makes me realise I still need to be very careful. Unluckily caught Delta despite being double vaccinated. This one is a scary prospect

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founding
Nov 26, 2021Liked by Gavin Giovannoni

Nitpick: if I remember correctly, grinch 1 was alpha (definitely in case of UK)... Delta only really hit Europe in q2

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Nov 26, 2021Liked by Gavin Giovannoni

Just my luck, guessing the second part of my transplant will be put on hold 👎

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Nov 26, 2021Liked by Gavin Giovannoni

Just my luck, guessing the second part of my transplant will be put on hold 👎

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How does a person like me, receiving Ocrelizumab via our wonderful NHS, find out if I have antibodies to Covid ?

Normally hospital will only do blood tests just before I’m due to receive infusion.

Have you heard other PwMS in UK being able to get their antibody question answered?

I have had all 3 “primary vaccines”. I’m told I’ll be given a “booster” in 5 months time. 🤷‍♀️

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