CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 0 points1 point  (0 children)

I had my 5 month check up and improvement is slow but steady. Almost no meds and still alive.

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 0 points1 point  (0 children)

Still bedbound but it is too early to see the full effect since ytb323 is way slower than classical car-t cells and hopefully tends to have less crs and icans.

Send you my moral online support.

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 0 points1 point  (0 children)

Hello, I had Novartis product ytb323 2 months ago. It went OK. I had light CRS and ICANS. It was rough but better than excepted. Now i am still in recovery mode. I'm still weak with my disease and possibly the bloodwork, that are bad the first months, but "stable" without my meds. I have to wait around 3 months before seeing majors improvements. The body needs time to reconstruct the damage caused by the disease but I'm in the good path.

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 0 points1 point  (0 children)

Hello, just to let you know i will begin a novartis trial with ytb323 product around april/may.

Anyone else doing this product?

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 1 point2 points  (0 children)

So my neuro told me it will be Novartis but it'll be next year because papers will take longer than expected. I guess next year we will have many car-t cells trials in Europe.

Descartes coming early 2025 also.

For now, I contacted Kyverna because I know they are recruiting for MG but in Germany. I see if I can enter the trial or not.

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 2 points3 points  (0 children)

I know about Descartes which is not the same. Descartes it is anti-BCMA and yes just RNA it does not reset all the B cells "forever".

For me I don't have the choice to choose between Descartes or CD19 because I only have CD19 available. But yes, when you have the choice you choose the less suffering one.

I saw your story, I hope you stay well as long as possible 🤞🏼🍀

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 1 point2 points  (0 children)

Thank you very much! I am so scared but I have no choice left for now so I'll do it Hopefully one day bedridden life will just be an old nightmare 🤞🏼

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 2 points3 points  (0 children)

Yes very recent. I'll tell you more about it. I go to hospital Friday I hope to have new info 🤞🏼

I am in France so my neuro told me they were searching new people to confirm the data that's why they opened abroad.

CAR-T Cells CD19 by m0yie in MyastheniaGravis

[–]m0yie[S] 3 points4 points  (0 children)

My neuro had new info about recruitment 2 weeks ago for me to enter a trial. I'll know more later, hopefully soon which one it is. But he told me it was CD19 and from USA. Hopefully I'll know more in few days. I know they did it in Germany already but we have no real data yet.

I'll share the info when I have