b3au :
Thank you for speaking on this! In doing so it’s also prudent to discuss the relationships between MCAS, hereditary alpha tryptasemia (HaT), and Systemic Mastocytosis. They are not mutually exclusive, there is symptom overlap and treatment overlap as well, aside from the TKI protocols for SM. I personally would like to see more research into why there seems to be a correlation between EDS and various mast cell disorders. I won the lottery with confirmed diagnoses of SM (KIT Postive & bone marrow biopsy), HaT (genetic testing), and MCAS. I had so many providers dismiss my symptoms as well as my experience for nearly a decade. Thank God for research hospitals. If you struggle with symptoms or suspect these conditions don’t give up. tmsforacure.org is a phenomenal resource. There are new therapies being approved all the time. I participate in a clinical trial of a TKI for systemic mastocytosis and the drug has been approved for release this December. In addition my daily regimen includes cetirizine, famotidine, montelukast, cromolyn, azelastine nasal spray, oral ketotifen (can be prescribed IN THE US but must be compounded as it’s not fda approved for oral use yet), budesonide (nasal spray), symbicort inhaler, omeprazole, weekly omalizumab (xolair) injections, and prednisone for flares. Each of these are meds are in my opinion an imperative part of a successful mast cell disease regimen. There are natural supplements like quercetin that can be beneficial also but you have to check interactions.
2026-06-15 09:44:04