39 Comments
Jul 26, 2023Liked by Gavin Giovannoni

My lumber puncture was negative for OCB but I continue to progress (seems to be speeding up in recent years) so what would this mean for me? Thanks!

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

I couldn't take part in the cladribine because my lumber puncture showed my MS isn't active. Does that mean I wouldn't qualify for this trial?

Mad, that nobody has looked at this drug since that early trial.

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

I'm a little lost. You say "The implication is that if we can scrub the brain clean of B-cells and plasma cells and reduce CNS Ig production, we may slow down or stop smouldering MS. " However, in other posts you have said that, in your opinion, EBV plays a central role. Why not focus on anti EBV strategies and leave the B cells alone? I know EBV homes in on B cells, so there is a close association but eliminating B cells doesn't necessarily mean EBV is eliminated. Is MS a cause or a symptom? Why can't it be smouldering EBV as the real culprit?

Expand full comment
founding

This sounds promising and exciting for NEID pwMS. I’m in the camp of Joe’s thinking that my testing was done many years ago, and in addition, at my age, I wouldn’t be a candidate for a drug trial. However, what is puzzling to me about cyclosporine etc is, like chemotherapies, that there will always be a risk/benefit analysis. As you’ve said, it should be treated like cancer or stroke. Anything that will stop progression without all of these various MS labels.🌷

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

I was accepted onto the Sizomus trial but was unable to continue as my lumbar puncture was negative despite being positive at diagnosis. Wafa contacted my hospital who confirmed it was positive previously. Is it possible for the bands to disappear? I thought not I would be very interested in your opinion thank you.

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

What about BTK in combination (or shortly after) Lemtrada / Mavenclad as a way to clear the pathway so to speak

Expand full comment
Jul 27, 2023Liked by Gavin Giovannoni

Thanks. I will have a look who is doing it and contact them.

Expand full comment
Jul 27, 2023Liked by Gavin Giovannoni

“the brain and spinal cord clean of B-cells and plasma cells”

3 questions:

Do people without MS (or other brain diseases) have B cells and plasma cells in the CNS ie is this a normal state of affairs?

Why do B cells and plasma cells (in people with MS) end up in the CNS and stay there (in the case of plasma cells for a long time)?

If therapies can scrub the CNS clean of B cells and plasma cells, what stops them coming straight back?

Expand full comment
Jul 27, 2023Liked by Gavin Giovannoni

What would hapen if b cell and plasma cell were removed from CNS to JC virus?

Expand full comment
founding
Jul 27, 2023Liked by Gavin Giovannoni

Hi Prof G. I’d be interested in your study of anti-CD19 targeted CAR T-cells. I was also wondering - you say BTK inhibitors are ‘close to market’ - how close? Can one go on more than 1 round of Cladribine if the 2nd round is Cladriplas? Thank you

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

You could use temozolomid( it crosses the BBB), has low side effects on glioma patients and it depletes also peripheral lymphocytes, not only central. I think temozolomid could treat MS better than aHSCT.

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

Sorry I don't know of anywhere more germane to post this question but I would be fascinated to know what you made of the recent paper on the correlation of MS with periodontitis.

https://pubmed.ncbi.nlm.nih.gov/37478676/

Expand full comment
Jul 26, 2023Liked by Gavin Giovannoni

Was there a “not” left out of this sentence?

“The transplant physicians eventually derisked the renal toxicity associated with cyclosporine, which is why I am surprised it was taken forward in MS.”

My understanding was that cyclosporine was a promising treatment, but the renal toxicity was an impediment to its use. What am I missing?

Expand full comment

At Minho university in Portugal, Dr João Cerqueira is conducting several studies, one of them is high dose rituximab (or ocrelizumab, I'm not 100% sure) to wash microglia and stop smoldering MS.

Expand full comment

Very interesting. My CSF was positive for oligo clonal bands on diagnosis 2 years ago. If I lived closer, would definitely participate in the trial.

Expand full comment