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@loribmt

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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Replies to "Good morning, @onthejoedock ( and Mrs Joe!) I’m a bit chagrinned that I’d forgotten about our..."

Aww sorry you had to go through all that I should've been more organized, but my mind works and works and works and maybe maybe something else could be done or to give Joe energy but I guess we're on the right track and I'll just maintain and be happy with everything staying OK and not getting worse thank you so much, though. I appreciate all the knowledge you passed on to me, check out the doctors response on the 18th. Thank you so much. Take care of yourself.