April 9, 2018
We certainly have a puzzling situation on our hands. When Brian was admitted to hospital on Friday (Day + 15) he had severe, total-body muscle pain, swelling in the knees and ankles, and a very diminished ability to locomote, so was transported by (non-emergency) ambulance. The most severly affected areas were his neck, shoulder-blades and knees. Fever followed. Heavy-duty pain meds were given so that physical therapy could be started, and I’m happy to say that over these 3 days he has regained much of his mobility and is not in much pain.
But what is this? CRS (cytokine release syndrome)? Or something else?
The most severe inflammation is following the path of old injuries and surgeries (football injuries, cross-country ski injuries, knee surgeries)… with the cruelest pain in the knees, which raises the question of whether CAR-Ts might excite inflammation where arthritis exists.
Each day has brought consults with thoughtful specialists… but no definitive answers yet. Stay tuned.