Hi,
Went through the same thing just this past March. Could not stand my previous hematologist and PA. My Dr was all numbers and could care less how hydrea was making me feel, the PA rolled her eyes Everytime I explained how sick I felt. I started on hydrea January 2024 and feel I lost a year of my life being sick constantly. I cried and laid on the couch a lot because I had no strength and felt like I had the flu everyday. My sister and I would go shopping and out to lunch and it was a total force. I started out on hydrea 7 days a wk, then 5 until I pushed to one day a week and the side effects never stopped. I asked my primary Dr if it would be safe to stop the med until I got an appt with a new oncologist he referred me to and he said there would be no harm because I also continued my baby aspirin which I had taken for over 20 yrs just because it was the thing back then. I stopped hydrea in Feb 2025 and had my appt with the new Dr 4 wks later. That four wks I was still sick as the hydrea left my system. My platelets stayed completely normal at 405. I told my new Dr I will not go back on hydrea and he agrees for now and said let's watch and see and if my platelets start increasing he will research a diff. Med not in the class of hydrea. I have had my platelets checked 4 times since seeing him and last result went down to 392 I was shocked. I researched a lot about ET and found a lot of dietary solutions as well. I drink a qtr glass of mo sugar 100 percent grape juice every morning and drink green every morning plus when I am really thirsty pure cranberry juice in carb water. I eat a small piece of 70 percent or higher dark chocolate and I watch the rest of my diet around 50 percent. Grape juice is known to help prevent stickiness of the platelets and the other drinks and chocolate are known to decrease platelets. I really like this new Dr and he is easy to talk to as well as his PA. I know he would like me to be on a med but understands how bad I felt on hydrea so for now we wait and I hope this continues well with the dietary changes I made plus a lot of prayers. Hope you find someone new that you feel comfortable with and you feel better. Janet