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How bad is a diagnosis of Polycythemia Vera?

Blood Cancers & Disorders | Last Active: May 18 12:08pm | Replies (30)
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@onthejoedock

Yes my husband had the JAK2 test after his platelets were in the 800's. And JAK2 TEST came back positive medium deterioration. Dr said he had jak2 ET. Dr started Hydrea 500 mg once a day. And set up a bone marrow biopsy. After months we got biopsy. Dr said Joe my husband, is polycythemia Vera because RBC are too high. RBC is getting too thick. So did a phlebotomy that day. Took 1 pint blood out and saline back in. And to do ever 2 weeks and take Hydrea twice a day. Then check bloodwork a day before next Phlebotomy. So my Joe instead of taking Hydrea twice a day to them all at once in the morning and relized that wasn't good it messed him up. So now takes one in morning and one in evening. But the evening makes him very tired and goofy. But it's getting a little better maybe. So waiting for next bloodwork to see how he is doing. Last bloodwork was platelets down to 673 and RBC were 52.7%. Thank you for your comments

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Replies to "Yes my husband had the JAK2 test after his platelets were in the 800's. And JAK2..."
Lori, Volunteer Mentor | @loribmt | Feb 5 9:03am

Good morning, @onthejoedock. When there is a mutation with the JAK2 gene, it can interfere with the proper production of all the blood cells…white, red and platelets. Some people will have only one issue such as essential thrombocythemia (ET) with the overproduction of platelets or Polycythemia vera (PV) the over production of red cells, though there are more conditions associated with this.

I thought you might appreciate this article which explains the involvement of the JAK2 gene with your husband’s PV and ET.
https://www.verywellhealth.com/jak2-mutation-5217909?utm_campaign=687680030-1175379671227571&utm_source=bingpaid&utm_medium=paid&utm_content=73461429226290&utm_term=o-jak2%20mutation-jak2%20mutation&msclkid=daabcf8367f4199652dcaa4393a62de9
It’s encouraging to hear your husband is starting to adapt to the HU. It can take a while and like I mentioned before, the doctor may consider lowering Joe’s dosage when his blood numbers level out.
It’s also important to have a good liquid intake during the day. This helps with flushing out waste from the body, regulating body temperature, and helping the brain function. If Joe isn’t drinking enough that might explain some of the confusion and exhaustion at the end of the day…just a thought. I know when I was on quite a few meds
I could tell when I hadn’t had enough to drink. I learned through my nurses at Mayo to drink room temperature water. It goes down a lot easier so I drink more. I’m no longer on meds but I still find myself drinking at least 64 ounces daily.

Fingers crossed for Joe’s next blood work! I hope his numbers are back to normal. ☺️

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