Polycythemia Vera

Posted by atir @atir, Nov 30, 2018

Have been diagnosed with polycythemia Vera recently, Any feed back

@hope19

Good Morning, So, back in March I had a bone marrow biopsy and aspiration done and the results came back positive for Polycythemia Vera, I had a long discussion with my hamotologist and I felt comfortable going the phlebotomy route as opposed to the hydroxyurea route for initial treatment . She would have preferred I do the latter as a preventative measure for future thrombosis, ( I have CVST as well. ) but I said let's try the phlebotomies and if my hematocrit level and hemoglobin are consistently not good, I will consider the drug. To make a long story short, I've had 2 scheduled phlebotomies with 2 scheduled blood tests a week previous to each one and I've cancelled both as my blood work came back not needing one. My question now is, could I have been misdiagnosed?

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Hi @hope19, I moved your message to this existing discussion about Polycythemia Vera so that you can connect with fellow members @atir @clarissa37 @chadknudson @apr931 @mwear and @juiceinjc. I'd also like to tag @1nan on this disucssion as she may have some experience to share about blood work and changing values.

Hope, have you talked to your hematologist about the blood work results. It may not necessarily be a misdiagnosis but rather remission. Are you able to schedule an appointment or virtual consult or even contact through the patient portal if your hematologist has one?

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Yes, I'm the one who always has her look at the blood results before a phlebotomy, and that's when she says, my levels are good so no need , reschedule for next month. I often wonder if I wasn't pro active with my health if I'd be having these phlebotomies for no reason. Very happy I decided to wait on the Hydroxyurea. I do have a session with her, but not until November. My next scheduled phlebotomy is for end of August with a blood test the week before, which I asked for and I will confer with her once again when the results come in. I get the results as well which is how I know how my levels are in comparison to how they should be. I'm not a doctor but maybe switching from the heparin to the equilis has somehow stabilized things? Or am I grasping at straws. Because I have CVST along with inter cranial pressure, pappilledema it was thought that the PV was the initial cause. I don't know anymore. I ve moved on..

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Anyone know of any clinical trials? Gene therapy, transfusion,stem cells.

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