I have PV, having fortnightly phlebotomy's and are taking 1000mg hydroxyurea daily. I have been taking HU for 3 weeks now, but my hematocrit levels are still at 61%. How long would you expect it to take to start decreasing your levels? I guess it is a bit of an open ended question, but what have others experienced out there, to give me an idea. Much appreciated.
It took about 3 months to lower the levels. and it went from /hu 3X week to 5X week. Taking aspirin as well.
At the time of my first phlebotomy and initiation of HU my blood was pretty thick; my hemoglobin was at 18.1; cannot remember my hematocrit, but No matter. Like you, I lost a pint every two weeks and because of my weight, at 500mg opposed to your 1000. It took awhile for my counts to achieve a hematocrit to drop to 45, and most of the time now it’s above that.
For me it took a couple to three months before I could back off the phlebotomy to monthly. I was at that regimen until just recently; once every two months for the last 8 months. I started HU in 2019.
Keep in mind, though, MPNs affect each of us differently; despite some broad generalization of both care and treatment, we all respond as we respond independently as individuals. How often is your clinicians checking your blood counts?
It’s very good to stay aware of your counts; try to not obsess over them. The added stress of blood count worries does not help. Eat well, drink lots of water, get out for at least a nice long walk a day or exercise as tolerated if too hot for you outside.
Are you taking low dose aspirin?
That medication did not work for me. It never reduced my numbers and it turned my veins black. I took Busulfan.
We never share your personal information with anyone.