51 Comments
Aug 28, 2022Liked by Gavin Giovannoni

The other interesting thing with Tysabri is how many people really love it compared to B cell depleters etc

Trauling thru Facebook / social media so many patients on Tysabri rave about it and even when switching to other DMTs. But I don't see the same in Ocrevus groups or others...wonder why that is?

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Aug 29, 2022Liked by Gavin Giovannoni

Many thanks for your explanations and rationale - they provide me with greater understanding of the situation I find myself in and help give me confidence that I'm making the best possible choice of new medication. Much appreciation for you taking the time to reply - it makes so much difference!

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Aug 28, 2022Liked by Gavin Giovannoni

Thanks for such a timely and detailed summary of the use of Natalizumab. I have been on natalizumab for nearly 5 years of which half that time has been on EID ( 6 weekly infusions). All has been great until I seroconverted to JCV positive on my last test in May22. Antibody levels were particularly high at this point (2.9) but a second test last month was slightly lower (2.6). A change is of course on the cards as a result. I clearly prefer to switch to an immune reconstitution therapy ( Cladribine) due to the shorter term immuno suppression rather than continuous as with ant-CD20 therapies ( Kesimpta and Ocrevius are the other options).

However I have concerns regarding any possibility of PML emerging when the immune system is reduced on either therapy but particularly for Cladribine as, although shorter term it is irreversible. I'd be grateful for your thoughts on what factors to consider in this imminent choice ( latest MRI is stable and no sign of PML or other activity) , bloods and vaccinations (HPV and Shingles have been completed) and Smear test is clear so it appears I'm good to go except for waiting for the lumbar puncture test for JCV DNA in the CSF. If this is clear does it suggest that Cladribine is on the cards as the next DMT? What else should I be considering in making my decision? I am 63 and have been diagnosed for 11 years, NEIDA on natalizumab for 5years but had a number of meds fairly short term before that ( Tecfidera, Avonex, Gilenya). All had to stop due to side effects not ineffectiveness. Had rebound after Gilenya withdrawal , which caused my last relapse in 2017.

Thanks so much!

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Aug 27, 2022Liked by Gavin Giovannoni

This is really great thank you

As someone on Tysabri the PML risk is my biggest worry (at this stage I'm JC negative and test myself every 3 months)

I've always thought to switch whilst I am JC negative as it makes the most rational sense and lowers risk of PML however with all my recent MRIs showing NEDA / stable no new lesions no new symptoms it becomes harder to change with the uncertainty of what happens

I wish there was a treatment for PML. It would make all of us have a lot more confidence and relieve a tonne of anxiety!

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Aug 27, 2022Liked by Gavin Giovannoni

Thanks so much for this. May I ask why some HSCT centres insist on a 3 month washout period of Tysabri before beginning treatment? What could someone do during those 3 months to try and reduce the chance of rebound activity before the HSCT process begins?

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Aug 27, 2022Liked by Gavin Giovannoni

Thank you so much for writing these newsletters. They are so educational and informative and an amazing contribution to the MS patients and caregivers community. I am reading each newsletter enthusiastically and they are not too detailed. Please continue… cannot stress enough how helpful it is

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Aug 27, 2022Liked by Gavin Giovannoni

At what point is it safe to restart tysabri after having hsct ? Im going to be asking to do this in october and got my cells back in march

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Aug 29, 2022Liked by Gavin Giovannoni

Thank you, excellent overview. Are there any studies that compare the efficacy of Ocrevus to Tysabri, radiographically, or clinically related to disability levels?

Does a switch between the two high efficacy DMTs result in measurable changes in progression in terms of lesion load or clinical progression in terms of EDSS? A statistically significant difference. What is your experience anecdotally?

Do dome people do better on one drug vs the other on these metrics? Not accounting for differences with concerns with PML and other side effects?

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Aug 28, 2022Liked by Gavin Giovannoni

Do you think once the EID efficacy results become better known and the real world evidence grows, there will be a notable uptick in natalizumab use? it would seem like it to me but I don't really know what makes things like that shift.

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Aug 28, 2022Liked by Gavin Giovannoni

Could Tysabri worsen other non MS demyelinating diseases/ symptoms like MOG? Have you ever had patients develop worsening symptoms on Tysabri with no evidence of new disease activity?

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Aug 28, 2022Liked by Gavin Giovannoni

Excellent article! Thank you Prof G.

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Aug 27, 2022Liked by Gavin Giovannoni

Does the CNS Lymphoma malignancy risk compound after stopping Tysabri or would that risk revert back to the same level of tysabri-naive individuals?

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Aug 27, 2022Liked by Gavin Giovannoni

Thank you for all information you provide.

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Aug 27, 2022Liked by Gavin Giovannoni

Do you recommend Natalizumab, for patients who are in wheelchairs? To possibly regain some of their function?

Thank you, for your continued support!

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Thank you for this

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Aug 27, 2022Liked by Gavin Giovannoni

Thank you for this, Prof G. I'm grateful for your MS Selfies, and there couldn't be too many for me. I'm still prosessing your last few about gaslighting, which have been massive and amazing for me. Treatment-wise, I'm having my second course of Lemtrada soon, and keeping an open mind about after that. I don't think I ever had the option of Tysabri, but I would have chosen Lemtrada (or AHSCT) anyway.

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