Hi everyone,
Dr. Afrin started me on hydroxyurea aka hydrea. I have aggressive systemic mastocytosis and UP. I am on all of the common masto meds and have been for a long time. I have also tried Gleevec, Sprycel, and Tasigna, along with aspirin therapy without much change in the anaphylaxis (3-4x week) or symptoms. ASPIRIN results were horrible! Have also been on Gastrocrom oral and inhaled...no luck.

Has anyone else ever been on it? If so, what was your experience? If not, have you heard anything about this antineoplastic drug?

Happy Holidays, Elisha

Thank you Joan. I am pretty much H1 and H2'd out . Have not tried Xolaire. I believe he did mention the Midostaurin at one point. I have an appt with him on the 5th and will see what he says.

Thanks, Elisha