@lindakay55 Great narrative of your experience with this condition.
My experience with it was very similar to yours in terms of initial diagnosis and what followed. My diagnosis was four years ago and I started with phlebotomy treatments and various dosage levels of HU. Only time I had a reaction to the med was one time I dropped it in a small cup of water and instead of tossing it, I drank it. Major itching for almost a day following that.
I’m now taking 500mg 4x a week and my numbers have stabilized. Still getting monthly blood tests and visits to the doctor are every 6 months.