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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)

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@nypara66

@chella65 Hello, sorry you have not gotten and definitive answers yet. I can say this. I am a soon to be 57 year old female who was diagnosed in Jan with PV. I just started menopause about a year and a half ago. Sooo many symptoms of this disease are identical to the change of life. Tingling, especially in hands and feet, hotness, flush face, headaches, fatigue, lack of concentration(AKA Brain fog)muscle/body aches, itchy skin, ALL are listed under both PV and Menopause. I know you are a bit older than me but they say this can last for up to 15 years or so? I am finding it difficult to differentiate which is which, but in the end I just have to pay attention and make sure that I get my labs done on schedule. I currently get Phlebotomies about every 6 weeks and take Hydroxyurea 500 mg 3X a week. It took until this month, 6 months later to get to dosage right. I am hoping my numbers stay stable. Hematocrit, hemoglobin, red cells and platelets were all high. Everything is acceptable currently. Fingers crossed for you and I both! Keep us posted.

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Replies to "@chella65 Hello, sorry you have not gotten and definitive answers yet. I can say this. I..."

I certainly remember menopause, I am post menopause as mine came on early and did last a while but it varied with intensity so there would be good days and some not quite as good. I totally agree and experienced symptom confusion. Many times the medical field must do a process of elimination. When I get back to my doctor in 3 months, she will review and if my labs are still high she advised she would confirm the diagnosis she suspects now and also will decide what we will do. I was aware of the bloodletting to bring the numbers down and only a couple of medications did I find in my research. I'm trying to eat well, drink plenty of water, take my supplements and move every day. I wear my Fitbit and try to get 10K or more a day which usually involves some type of silver sneakers exercise I find on Utube.
Wishing you a great weekend and thank you for responding.