HCQ + EDS
I have hEDS, MCAS, dysautonomia, and SIBO. Every standard autoimmune panel has always come back negative despite feeling progressively worse every year.
I had whole genome sequencing done through Baylor Genetics which identified multiple confirmed genetic variants that keep my immune system in a state of constant threat response even when there’s no actual threat. The variants stack on each other: one keeps the master inflammatory switch permanently on, another amplifies the signal with no brake, a third feeds the same pathway independently, and downstream products loop back and reinforce the whole thing. The result is a body that can’t switch to repair mode, mast cells with a progressively lower activation threshold, and a constant state of threat like there is an injury or a virus to fight, even at rest and running continuously. I learned my immune system is innately dysregulated., which is what the cutting edge researched has shown with EDS. This is the same architecture of my mother who gave me these genes and now has multiple autoimmune conditions, spine problems, constant pain and fatigue and COPD, although never smoking a day in her life
A prednisone trial that cleared everything simultaneously was the proof of concept that upstream immune suppression was the right approach. I started HCQ 200mg yesterday as the sustainable version of that and I am hopeful. Also running Dupixent and LDN which have helped significantly. How long did you see to notice changes in any problems with HCQ?
Has anyone else with hEDS or MCAS found similar innate immune architecture on genetic testing? I am lucky to have a few providers that engaged with me, but I’m slightly concerned on the HCQ since it is meant for lupus, but it addresses the exact NFKB over activation architecture of my body.