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CAR-T cell Therapy: Joint and muscle pain

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Aug 9 9:26am | Replies (46)
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@annberkowitz

I had CAR T in December 2022. In April 2023 I started experiencing leg and feet cramps, Charlie horses and it feels like my muscles are bubbling, I know it's the nerves being over active. Happens in the evening and at night. Very, very painful some nights. I tried icing last night but the relief was short term. Most nights I don't sleep through the night. One thing I've noticed is if I have fruit or a dessert it is worse. Could be a coincidence. I'm wondering if these symptoms eventually goes away.

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Replies to "I had CAR T in December 2022. In April 2023 I started experiencing leg and feet..."
Lori, Volunteer Mentor | @loribmt | Jul 1, 2023

Hi @annberkowitz, Welcome to Connect. While we’re waiting for other members such as @grandpabob, who also had Cart T Therapy to respond, have you mentioned the leg and feet cramping to your therapy team?
I had a bone marrow transplant and I know the bubbling feeling that you’re talking about but I haven’t experienced cramping. The bubbling seems to happen on days when I’ve been really over active. When I sit down at night it feels like effervescent bubbles in my body.
Do you have frequent blood work done? Do you know if this is related to your magnesium levels by any chance? I have fewer incidences when I routinely take magnesium glycinate daily.
Interesting correlation between fruit or dessert… Hopefully someone can answer your questions for you.
What led you to requiring the Cart T Therapy?

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Bob, Alumni Mentor | @grandpabob | Jul 2, 2023

Hello Amber, I had Car T in 2018, I have had quite a bit of leg cramping as well even today. I found that doing yoga poses (stretching) has helped a lot, especially those that stretch out the lower body. When I get a bit lazy doing them, the cramps start up again. I agree with you that moving helps a lot.
I have not really found any correlation to my diet, however it makes sense that some foods could affect cramping.

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