12 Comments
founding

Like many, I am looking at what to do with my ocrelizumab therapy - vaccine issues aside, I am not very happy with it (but maybe I am expecting too much).

Any chance we can get a series of posts with an uptodate low down on the efficacy and side effect distribution of the high efficacy DMTs?

I know we do not have any decent head to head trials but some trends emerge. Would love to see if my own research is valid.

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An interesting case study and probably a switch that a number of anti CD20 patients are considering. My question is, setting vaccine readiness aside, is there an optimal timeframe for commencing Alemtuzumab post anti CD20. Is it necessary to wait for repopulation of B-cells when there could actually be some benefit in surpressing them whilst the t-cells repopulate? And what would this mean for covid vulnerability? No vaccine protection is one thing but if t-cells are wiped by Alemtuzumab, do you become a sitting duck?

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author

Yes, I think in the middle of a pandemic not having B-cells and then hitting your immune system with alemtuzumab will increase your risk of getting COVID-19 and severe COVID-19. This is why the most pragmatic approach will be to wait 9-12 months post your last dose of ocrelizumab to see some B-cell repopulation before having alemtuzumab.

With regard to preventing secondary autoimmunity, the above may be sufficient, but this needs to be formally studied.

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author

Saying this the dose of alemtuzumab that we use in MS is relatively modest and the immune system is not that compromised compared to say with HSCT.

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Would the same logic apply to HSCT i.e. waiting for repopulation given that they wipe your B-cells anyway? Perhaps ocrelizumab followed by alem is a kind of HSCT light

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author

Some BMT units abroad actually use rituximab as part of their ablation protocol. I think this may not be true HSCT as these units use quite low doses of cyclophosphamide.

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founding

Last year, local HSCT unit told me there was no point in waiting.

I am also wondering about the HSCT light thing, considering that HSCT is probably off the table for me (not active enough by their standards).

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Where is your local HSCT unit please?

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founding

Zurich, FWIW, they use BEAM-ATG

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Mar 11, 2023Liked by Gavin Giovannoni

Can you suggest any ideas of how to minimise risk of thyroid autoimmunity associated with alemtuzumab? I’m a professional singer & terrified of destroying my voice if I was to require a thyroidectomy.

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author

Unfortunately, not. The evidence is simply not there in terms of knowing what to do. We wanted to test a low dose of an anti-CD20 to prevent B-cell hyper-proliferation, but we didn't get the trial off the ground.

https://gavingiovannoni.substack.com/p/case-study-why-is-having-another#details

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Thank you so much for your reply. It’s very kind of you to answer these questions.

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