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After CAR-T: How to deal with personality changes?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 30 1:49pm | Replies (12)
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Profile picture for pegloyd @pegloyd

I had Car T nine months ago and dealt with ICANS and CNS. My personality was very much affected by Keppra and the steroids. I was later told there is a term doctors have “keppra crazies “. Your son will return to himself after he’s off it. I wish him the best.

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Replies to "I had Car T nine months ago and dealt with ICANS and CNS. My personality was..."
Lori, Volunteer Mentor | @loribmt | Sep 29 10:04am

Hi @pegloyd Thank you so much for sharing what you’ve learned during your CAR-T recovery. I’ve not heard of the “keppra crazies’ but I’m sure you’re ringing a bell with others who’ve experienced the side effects of the meds!

Hopefully your message will bring encouragement to @crimsonmae0825 during her son’s recovery from his CAR-T therapy.

If you don’t mind sharing a little more about yourself, what underlying diagnosis led to you requiring the CAR-T cell therapy?

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carolm25 | @carolm25 | Sep 30 1:49pm

@pegloyd
Sorry to hear about your KEPPRA effects but while I had successful CarT therapy 2.5 years ago I’d never heard of the drug until your post. Why did you have CarT therapy? And what condition prompted your doctor to prescribe the KEPPRA?

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