Long term medication Hydroxyurea

Thank you janrossi for your reply. I really appreciated reading your response in regards to my question. Has anyone else who is taking HU had issues with your red blood cell count going too low and what did your hematologist have you do. I have been taking one 500mg of HU 5 days a week. Does not seem like much compared to some people. I have been taking it since March and my platelets are going down slowly from 900 to 643 today. With red blood cells going down too much as well my hematologist said today to stop taking 5 HU and take only two a week and do a blood test in a month to see if the red blood cell count goes up. My platelets will probably go up also which concerns me. Thank you

@dharte47 I have been on the hydroxyurea for about four years. I am 80 years old. I had to stop taking hydroxyurea for two weeks because my hemoglobin and red blood cells were so low and I I am anemic. My oncologist has been doing a blood check every week for over a month. My platelets have slowly gone up and are now at 701. Yesterday, after a blood check, my oncologist said for me to start taking one hydroxyurea a day and he is going to check me next week and see where my counselor. I get very tired and weak most days. My doctor has talked about me going on interfere on. He says this medication has very bad side effects and you feel like you have the flu. This is so scary. He did say that after a time only interfere on the side effects can get better.

Hello! I’m sorry to hear others don’t understand the condition, I totally relate. I’m 47 y/o and was diagnosed with ET when I was 26. Hematologist had me on baby aspirin for all these years because even though my plalets were in the 800 range, I was considered low risk. I unfortunately had a stroke two months ago and now I’m considered high risk. I started taking 500 mg of HU, but it didn’t help so doctor increased the dose to 1000 a day. Doctor mentioned that many people have been taking HU for decades, so I found comfort in knowing that and also happy I found this forum. I also have episodes of diverticulitis every now and then. No side effects from HU yet, but it’s only been two months since I started taking it. I just feel a bit more tired than normal but it could be my brain recovering from the stroke.
My family and friends don’t understand ET either, but you are not alone. It’s a blessing that you are under your doctor’s care and help to mitigate risks. Sending you positive vibes, energy and prayers.