CAR-T cell Therapy: Joint and muscle pain

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.

Hi Lori,
What happened requiring CAR T-- relapse Non-Hodgkins high grade aggressive DLBCL. Was lucky the FDA approved for folks that had one line of treatment last year. My issues did start until sometime in April, 4 months after treatment. I'm going to try and elevate my legs at night see if that helps. I've always been an active person so I don't think that is it since they started before I began Pilates. Actually I think moving helps.

I'm on the 3 month scan/pet and bloodwork schedule until the end if the year. Last one was at the end of March and my electrolytes and everything else was all good.

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?

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.

Hello @shorheal , welcome to Mayo Clinic Connect. Cramping certainly can be painful. I had cramping after Car T as well, I found that a lot of stretching and insuring I was hydrated helped a lot with that. Once I was strong enough, I started doing yoga (YouTube) that has helped immensely.

How long has it been since she had the therapy?

My partner has intermittent leg and foot cramping, it gets really bad... We use a heating pad to help ease the pain. This usually only happens at night when she is laying down.

Hello @rgerson56 – I see this is your first post on Mayo Connect.

Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We're not medical professionals who can offer medical advice.

I see your expectation is to undergo Car T Cell Therapy in the future.
I want to invite you to post on the Car T site, as you may be more apt to get the information you are looking for from those that follow that group. I also encourage you to ask questions as you see fit. Hopefully someone will have the first hand information you are looking for.

Will your treatment be soon?

From which Health Care Center will you be receiving treatment?

Stay well and reach out at any time.

Much good health to you in your next phase of your journey. Please keep us updated. Car T therapy is in my future, too.

@wycowgirl307 Sounds like you had a very difficult time after CAR T cell therapy. Has the oncologist said if you might have the same side effects this time around? Have they mentioned any preventative measures that can be done?

I had a CAR t Cell BCMA trial for multiple myeloma at National Institutes of Health) on May 1, 2019. I had VERY LARGE SKIN NODULE in addition to vbone lesions, extra medullary mutiple myeloma. I suffered extreme joint pain. I thought it was due to having steroids stopped but my oncologist said it wasn't. I have read the joint pain is more common with people who have many tumors. My symptoms included knee pain, even when squatting down to the toilet or kneeling on floor. I also thought I had carpal tunnel syndrome because my wrist ached and had sever stabbing pain when I squeezed my hands (like using a wash cloth). In addition, to joint pain, I had severe neuropathy. My oncologist said neuropathy was from chemo received at start of CAR t cell therapy. Fortunately, my neuropathy is 90% better (8 months later). Also, my joint pain started improving 4 months after receiving CAR t cells. I still Have some joint pain but is approximately 70% better. The CAR t cell worked very well and I had about a 90% response. BUT it was short term, my tumors are now growing aggressively and I am starting chemotherapy next week and hope to have a CAR t cell reinfusion.