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How bad is a diagnosis of Polycythemia Vera?
My husband was recently diagnosed with polycythemia Vera, (PV). Dr started him on Hydrea 500 mg twice a day and a phlobotomy procedure every two weeks he had one treatment so far. He's having reaction to the 2 nd Hydrea pill. It completely exhaust him almost immediately after taking 2nd dose at super time. He seems to get a little confused over things and looks very tired. He passes out within a half hour. Does anyone else go thru this or know if this is okay treatment? My husband will be 77 in June. Thanks from a very concerned wife.
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Hi I am 75 also and diagnosed maybe in 2019. Anyhow I have only done baby aspirin and have refused medication. MyHgb platelets etc are within normal my RBC a touch high. But never had a blood clot My oncologist will not allow my HCT to go beyond 44. Even 44.5 they want to do phlebotomy which is draining and I get it done now monthly
It is too much.
Any comments appreciate
I am well hydrated. Sleeping ok. No itching follow mostly organic. And elimination of sugar except fruits etc
Glad things are going well for you. My Dr put me on Jakafi and I no longer have phlebotomy’s. I’m doing really well with no side effects
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2 ReactionsHello. I was diagnosed with PV about 5 years ago. I’ll be 78 in December. I was prescribed 1000mg Hydroxyurea daily (2 capsules) but I was told to take them once a day and my hematologist advised it was best to take them at night, before bed in order to minimize side effects.
I also take folic acid and low dose aspirin. Despite this once my hematocrit hits 42 I feel it in my legs and go in for a phlebotomy maybe 3-4 times a year.
Maybe your husband’s doctor has some reason he wants the dosage split?
The exhaustion is the most obvious side effect I’ve had. It seems to come and go now. Some days I have more energy than others. Much as I hate to admit it exercise (which I’ve always thought should entail nothing more than a good book and comfy chair!) and diet have their positive effect. I rarely eat anything with real sugar in it anymore, eat mostly a keto diet and I make myself move more than I ever have. Walking is difficult for me so I use a recumbent elliptical machine and hate that less than any other form of exercise.
My best advice is to communicate with your husband’s doctor (you didn’t say whether you have a hematologist. If you don’t, I would get referral to one.)and if you don’t feel comfortable with that MD seek out another who will listen and offer alternatives and solutions.
He’s lucky to have you to help him through this and advocate for him. Don’t forget to take care of yourself too!