I keep hoping the next treatment my oncologist and rheumatologist start me on will get rid of this swelling. It’s taken over my life. I tried IVIG- which semi brought down swelling for a few days. It was really difficult to get approved by insurance. I’m now on Anakinra, which hasn’t given any relief yet.

My Capillary Leak Syndrome started over a year ago which led to me being taken off immunotherapy and being hospitalized for sepsis. I’m looking for anyone going through this awful disease. Please get back to me!