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.