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How fast do you start to feel hydroxyurea symptoms?

Blood Cancers & Disorders | Last Active: Jun 15 7:07am | Replies (61)
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@onthejoedock

So just in case I didn't send correctly before this is Plt levels over months to years.
Hu was used for short time and stopped. Then now the Jakafi. But coming down again. So hopefully we can get less pills for control now. And I will ask about maybe ET instead of PV. He get ultrasound on pituitary gland thyroid on the 13th to see what's going on there too thank you for everything again. 👍😊🙏

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Replies to "So just in case I didn't send correctly before this is Plt levels over months to..."
onthejoedock | @onthejoedock | Jun 9 7:44am

And have the EPO blood test checked

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Lori, Volunteer Mentor | @loribmt | Jun 9 9:22am

Good morning, @onthejoedock ( and Mrs Joe!) I’m a bit chagrinned that I’d forgotten about our conversation back in February where you mentioned Joe had platelets in the 800s. I re-read all of the old replies this morning to refresh my memory. I should have done that yesterday before responding. So I apologize…let me start fresh.

Having read through all our conversations I have the complete picture now that Joe has the acquired JAK2 mutation which is causing his platelets AND red blood counts to be high. This can have the potential for serious risks of blood clots. So that is why Joe’s doctor is treating his condition which has been diagnosed as having both ET and PV. His initial diagnosis was ET but then PV was added. Because of this confirmation of PV, there’s no need for Joe to have the EPO test.

Here is one of our previous conversations with a good article imbedded to read about the JAK2 mutation.
https://connect.mayoclinic.org/comment/1009921/
While the treatment plan is working to bring Joe’s escalating blood numbers down to a normal level, it’s also making him miserable. There can be a period of trial and error before finding the middle ground with dosages. Now that his numbers are fairly normal, I’d definitely ask his doctor if there can be a modification in the dosage level. I’ve had similar experiences myself, being able to lower a dosage. As long as I was maintaining the good numbers I could stay at the reduced rate. Sometimes the cure feels worse than the ailment, right?

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