CAR-T cell Therapy: Joint and muscle pain

My wife had CAR-T in June for r/r DLBCL after having had R-CHOP (6 rounds), consolidative radiation (18 fractions), and bridging immunotherapy (3 rounds). Went into CAR-T with a clear PET/CT and low tumor burden. Tolerated the CAR-T as well as can be expected with only margin grade 1 CRS and no neurotoxicity although was still a rough go. Was given Anakinra (Kineret) during her 11 day hospital stay to help ward off CRS and ICANS effects and never needed Tocilizumab. And is now in remission based on her +100 day PET/CT. However, she continues to be neutropenic with neutrophils bouncing around between 600 and 1000 and WBC around 1.6 give or take. Biggest things right now is joint/muscle aches and pain. The PET/CT showed some non-cancerous activity in her right hip area which a subsequent MRI determined to be a muscle 'tear' however she has no recollection of injury and at the time wasn't feeling any pain there but did have pain in the other hip and shoulders which didn't light up in the PET/CT. Orthopedist recommended muscle building and increased protein intake to support muscle rebuilding for the hip. Since then, aches and pains have evolved with left shoulder presenting as the worse. So back to the Orthopedist again and an x-ray shows no joint issues but manipulation leads to suspicion of a rotator cuff issue. Again, no history of injury but she has been an active swimmer most of her life typically swimming 1 to 1 1/2 miles a few times a week. Recommendation was for an MRI but still being immunocompromised prevents any surgical repair so orthopedist dismissed doing an MRI at this time and instead provided some PT exercises to do and recommended a cortisone shot as an interim therapy. Although her CAR-T team are agreeable with her having the shot, we're on the fence for the time being waiting to see how the PT exercises do as some relief seems emergent. The 3 Oncologists she sees throughout the year between our summer and vacation homes and her CAR-T team, are all downplaying the role CAR-T might have in the onset of the joint/muscle pain but another CAR-T support forum on FB and the account of another CAR-T recipient we personally know along with the comments of others here all indicate that this is actually more common than is apparently being talked about by medical professionals. Some good tips have been provided in this thread but we're interested in knowing more about possible links between say neutropenia, auto immune issues, and inflammation triggers that might be in play with the goal of figuring out how to break what seems might be a vicious cycle. In many ways, almost seems like a delayed CRS type of inflammatory response going on and if the CAR-T cells are still active, they may be a contributory part of the problem. And it is interesting that Anakinra is an interleukin-1 receptor antagonist (IL-1Ra) labeled for use in rheumatoid arthritis cases in reducing inflammation and is now being used off label prophylactically against CRS and ICANS while in the hospital. With that, maybe there is a role for Anakinra to be used beyond the acute CRS and ICANS risk period.

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?