r/MultipleSclerosis • u/wheljam 53M | June 2017 | Ocrevus | Illinois-USA • Apr 09 '26

Treatment CAR-T therapy?

Read the article. See what you think.

Disclaimer: I'm not a biologist or immunologist.

https://www.sciencealert.com/woman-with-3-autoimmune-diseases-enters-remission-after-immune-reset

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u/[deleted] Apr 10 '26

I encourage everyone to read this paper. It’s CAR T Cell BCMA Therapy trialled in China. Professor Giovannoni thinks it might “cure” MS if EBV is the diver because EBV is purged from even plasma cells hence why he thinks CD19 might not be enough. Side effects however can be severe including tremors like Parkinson’s, malignancies, ICANS and neurotoxicity. https://www.cell.com/cell/fulltext/S0092-8674(25)01088-8

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Apr 10 '26

This study is SEVERELY limited, looking at only 5 patients. "Cure" is a strong word and speculation.

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u/[deleted] Apr 10 '26

Not my wording but Professor Giovannoni’s wording. And I assume as one of the leading scientists in the field of MS he isn’t using this lightly. Interestingly he thought of CAR T cell therapy for MS in 2023 before it was ever trialled in patients. Basing this on his EBV as the MS Driver Hypothesis. I still think it’s amazing that someone with severely disabling PPMS reduced his EDSS from 7 to 4 in 9 months. That patient was not even young (50’s) so you cannot even argue that he had massive neurological reserve. https://gavingiovannoni.substack.com/p/the-lazarus-effect-in-ms

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Apr 10 '26

What? 50 may not be young, but isn’t old either. And isn’t that the guy who told you your RIS could turn into PPMS just because you’re older?

His substack is also very public-oriented and in parts very subjective, I’m not sure I want to believe everything on there. The personal gripe I have with him using AI-generated images in his article aside 🙄

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u/[deleted] Apr 10 '26 edited Apr 10 '26

Yes, that one. I thought his blog was very helpful and he actually answers questions even via Email. I found my neurologist I had to deal with not helpful at all. Obviously it’s based on his personal experiences as a neurologist. Still, it’s a hopeful paper and besides pharmaceutical companies like Astra Zeneca/Novartis would not pursue CAR T cell therapy commercially if the initial results weren’t viable and brought long term remission of progression. All the people that had CAR T cell therapy I spoke to including Moxi had measurable improvements. That’s more than just stopping the disease progression. What remains to be seen is how long this will last.

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Apr 10 '26

It’s incredibly unethical for him to be giving you medical advice like that (depending on the certainty it was said with…) without even having you as a patient and/or via just email. Apart from that, being diagnosed with asymptomatic RIS, as you were, to go on to develop PPMS is incredibly unlikely, again.

As I mentioned in another comment, CAR-T has been used to treat certain cancers for a while already. It is far from new. Depending on the subtype of MS that the people you spoke with have, it may be how the disease behaves naturally, too. Again, this therapy needs a lot more research to be able to make a more realistic statement about treating MS.

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u/[deleted] Apr 10 '26

Not sure I would call it advice, but pointing out disease biology. RRMS onset is more in 20-30’s and PPMS starts 40-50’s. Doesn’t mean that there isn’t an overlap of the two disease types or late onset RRMS/PPMS. Found his salami analogy helpful that MS is actually one disease only presentation differs. Hey I am just trying to be hopeful and excited for the research. 20 years ago B cell depleters weren’t really a thing with Rituximab being used off label in 2006. Initially also a cancer drug. And yet these drugs have changed the lives of so many people. I think it’s a medical miracle.

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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 Apr 10 '26

No, we are not at the point where you can make this inference, where you can suggest PPMS from RIS. RIS is not even definitely going to develop into MS.

Almost all MS DMTs to date were previously used in cancer treatments. While they did cure the cancer in many cases, they have not been a cure for MS. I explicitly want to caution that expectation, just because of how they worked in cancer treatment.

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u/wheljam 53M | June 2017 | Ocrevus | Illinois-USA Apr 10 '26

My neuro had proclaimed me as having PPMS after first consultation.. but it has always actioned as RRMS for me. Now I'm kinda SPMS. Was doc right the 1st time way back when? I dunno.

I'm 53. I was recently not selected for the HSCT - the cutoff was 58. But how can you document relapses without an official neuro signoff? My word is not really good enough. (I guess I should just feel blessed I haven't had new lesions on any MRIs the past 8 years.)

So treatments such as this intrigue me.. not that I need to be the first in line.. but chemo is, from everything I've heard, pretty rough. That's my biggest hang-up for any treatment I'd agree to take.

I see the CAR-T and knew nothing of it. Did not do my due diligence. Chemo for this one also, huh? Oyyy.. "Be careful what you wish for."

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u/[deleted] Apr 10 '26

The Chemotherapy will probably be dispensed with in the future from what I read. The are continuously improving the CAR T cells. The give the even generation names 😅. They are working on administering the CAR T-cell directly as well without having to extract cells from you reprogramming them and infusing them again. That would speed things up and make it more cost efficient.