In March 2025 I completed one cycle of daratumumab—one injection a week—for #Sjogren’s with small-fiber neuropathy, dysautonomia, and severe exercise intolerance #MECFS. For the first few months after the last dose I honestly felt no change. But from August 2025 until today the improvement has been remarkable: I’m walking every day again and even doing resistance training. I paid for daratumumab out of pocket because it isn’t approved for my indication. I’d repeat the cycle to keep the momentum, but it’s simply too expensive to self-fund. It’s frustrating that in Belgium’s “social” healthcare system, some conditions are fully covered while others like mine are left behind.
