@mjfp49 my dr is comfortable with a new high normal. He wants to keep them below 600.

@mjfp49
I'm so glad you asked this question, because I'd like to know too.

After I was diagnosed with ET, JAK2 positive, my doctor told me if mine got above 600k I'd have to go on HU, and they eventually got that high. I was taking one 500mg Hydrea capsule daily beginning early this year until my last checkup. I was having some neuropathy which seemed to greatly concern the PA, so she told me to leave the HU off on Saturdays and Sundays. I go back for a checkup on Oct. 2 and hope my platelet count hasn't increased too much.

I'd be fine if my platelets stayed below 600k (because I didn't have to first go on HU below that), but the count has been in the 200s lately and the doctor has been very happy with that. I'd like it a little higher, because my white cell count is at the bottom of normal and my red count is just a bit below normal and I don't want them to drop any further. We'll see what they say next month.

Prayers and best wishes for all who are in this ET club!

@mjfp49
Hello. My platelets were over 600 when I started taking 1,000 mg daily HU. I’ve only been taking it for 9 weeks and my last blood draw showed platelets down in the 200’s. My Dr told me to keep taking 1,000 mg a day but I’m wondering if it’s time to ease up on the dosage. I haven’t had many side effects, definitely more exhaustion and recently some headaches and leg/hip pain.