Diagnosed with Polycythemia Vera in August. I was given Hdroxyurea

Posted by katrink @katrink, Sep 23 8:11am

500mg a day, then bumped up to 1000mg, now at 2000mg.
Fortunately, my body is tolerating the meds so far.
But last week, they attempted phlebotomy in both arms.
The blood would start, but failed to flow.
Because I was having problems with my toes (before I was diagnosed)
which I thought was arthritis, I have been taking baby aspirin for about 9 months.
Anyone else have problems with phlebotomy?

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I’m 76 years old and was diagnosed with polycythemia vera with Jack to in 2021. I was doing phlebotomies and baby aspirin and now I am on Jakafi which I have no side effects and no more phlebotomies. At times I do get tired, but I find that if I just rest for 10 minutes then get up and do something go for a walk exercise in someway I feel so much better. Don’t let words and other people‘s symptoms be your symptoms. I actually don’t even think about having this disease. I know other people have it worse. I’m not making light of that, but it can be managed. Live for today. Good luck.

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Profile picture for katrink @katrink

Yes, the Jak2 was positive. And yes, I'm seeing an hematoligist. I knew the phlebotomy might be a problem. I have had problems for quite a few years with blood draws. First hot water in bags, then they went to pediatric needle, then finally butterfly needle.
And with the phlebotomy last week, the blood started, but just wouldn't keep flowing into the tube.
I think my doctor is hoping the Hdroxyurea will work to bring my hematocrit down.

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@katrink
Hello,
I have no solutions but only sharing my experience since it is similar to yours. Six years ago I was diagnosed with the Jak2 mutation. Since then I've had phlebotomy about every other month depending on blood test results. Because I have other medical conditions, I choose not to complicate issues by taking any chemo. even though doing so would likely minimize or eliminate the need for phlebotomy. My arm also requires hot packs, pediatric needle and now always a butterfly needle after much searching for an elusive vein. During phlebotomy my blood may flow normally, slowly or actually stop flowing at all. There are many variables. Because of "chronic phlebotomies" I am anemic and feeling poorly. Hence, the next phlebotomy is cancelled hoping that my "blood will rest." Fortunately, this "hiatus" is allowed because my blood test results were unexpectedly "good." More to be revealed at January's appointment with the oncologist. All that is just to get the preliminary blood test before phlebotomy begins on the other arm...which now has a vein with scar tissue so is no longer the point of entry. Yes, things are getting complicated due to my choosing no chemo., so there is always more to be revealed. I wrote simply to help you feel there is another person who mirrors your situation. I do not know of anyone with this condition, so the Mayo site is invaluable. You likely know that this is a "rare incurable blood cancer." Hmmm...does that make us "rare birds of a feather?" I hope my (invisible) feathers are brightly colored! 'Nuff said. Best of luck!

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Hi @katrink

I was diagnosed with PV in July 2024. I had been feeling a bit “off” for about a year, but my annual physicals had not revealed anything out of the ordinary. I usually live and work in New York City, but have houses in southern Indiana and northern Minnesota. My regular primary care doctor is in Southern Indiana just cause it’s easier. I went into a local clinic up in Minnesota while I was doing some work on my cabin up there, and that’s when I found out that I had polycythemia vera from a routine blood draw. Looking back over my test results from my primary care physician in southern Indiana, I found that I had alarmingly elevated WBC, RBC, platelets, and hematocrit for at least the previous three years. That particular, and now former, primary care physician never said anything about any of that. He prescribed Blood pressure control medication….
So in July 2024, after my PV diagnosis I started hydroxyurea, and phlebotomy. The first couple of phlebotomies were like you describe, blood very thick and barely flowing. Luckily, in the small town hospital in two harbors, Minnesota, there was a great nurse who managed to get complete blood draws despite the difficulty. I was on 500 mg of HU, and had a phlebotomy every week for 11 weeks until things finally started getting under control. The hematology oncology doctor that I was working with in Duluth Minnesota did a pretty good job, all things considered. PV is a pretty rare disease and I’m sure that he’d probably never seen a case of it before, as the population of the greater Duluth area is only about 180,000 people. After things were controlled, I went back down to southern Indiana and found a hematology oncology person at the University of Louisville Hospital. He is a clinician and a researcher at the university there. In going over the treatment plan that the doctor from Duluth had initiated, he noticed that I was also being given an iron supplement. The doctor from Duluth saw that my iron was very low, which it turns out is a result of the hydroxyurea doing the job that it’s supposed to do. So giving me iron was interfering with the hydroxyurea, which was why I was having so many phlebotomies. As soon as that excess iron was out of my system, which was in about November 2024, things got a lot better and I have not had a phlebotomy since.
It’s taken some time, but I have educated myself enough about the disease to be able to deal with it on the day to day and live more or less normally. I’m 72 years old, still teaching architecture in New York City, walking about a mile to the subway three days a week to go in for classes. I end up walking about 4 miles on each of my teaching days. And sometimes I’m a bit tired other times perfectly fine. Drink a lot of water, I do about 3 quarts today. Stay with the meds, get some iron through the food you’re eating like dark green vegetables and beets, etc. Try to get out and walk a bit if you can. This whole thing is manageable.

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Profile picture for pineyb @pineyb

Hi @katrink

I was diagnosed with PV in July 2024. I had been feeling a bit “off” for about a year, but my annual physicals had not revealed anything out of the ordinary. I usually live and work in New York City, but have houses in southern Indiana and northern Minnesota. My regular primary care doctor is in Southern Indiana just cause it’s easier. I went into a local clinic up in Minnesota while I was doing some work on my cabin up there, and that’s when I found out that I had polycythemia vera from a routine blood draw. Looking back over my test results from my primary care physician in southern Indiana, I found that I had alarmingly elevated WBC, RBC, platelets, and hematocrit for at least the previous three years. That particular, and now former, primary care physician never said anything about any of that. He prescribed Blood pressure control medication….
So in July 2024, after my PV diagnosis I started hydroxyurea, and phlebotomy. The first couple of phlebotomies were like you describe, blood very thick and barely flowing. Luckily, in the small town hospital in two harbors, Minnesota, there was a great nurse who managed to get complete blood draws despite the difficulty. I was on 500 mg of HU, and had a phlebotomy every week for 11 weeks until things finally started getting under control. The hematology oncology doctor that I was working with in Duluth Minnesota did a pretty good job, all things considered. PV is a pretty rare disease and I’m sure that he’d probably never seen a case of it before, as the population of the greater Duluth area is only about 180,000 people. After things were controlled, I went back down to southern Indiana and found a hematology oncology person at the University of Louisville Hospital. He is a clinician and a researcher at the university there. In going over the treatment plan that the doctor from Duluth had initiated, he noticed that I was also being given an iron supplement. The doctor from Duluth saw that my iron was very low, which it turns out is a result of the hydroxyurea doing the job that it’s supposed to do. So giving me iron was interfering with the hydroxyurea, which was why I was having so many phlebotomies. As soon as that excess iron was out of my system, which was in about November 2024, things got a lot better and I have not had a phlebotomy since.
It’s taken some time, but I have educated myself enough about the disease to be able to deal with it on the day to day and live more or less normally. I’m 72 years old, still teaching architecture in New York City, walking about a mile to the subway three days a week to go in for classes. I end up walking about 4 miles on each of my teaching days. And sometimes I’m a bit tired other times perfectly fine. Drink a lot of water, I do about 3 quarts today. Stay with the meds, get some iron through the food you’re eating like dark green vegetables and beets, etc. Try to get out and walk a bit if you can. This whole thing is manageable.

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@pineyb Welcome to Connect! Thank you for sharing your experiences and the advice for how you’re coping with PV. Looks like your PCP missed the boat on potentially diagnosing this much earlier. Glad to see it’s under control now, you’re active and enjoying life! It was interesting how the excess iron from supplements was interfering with the hydroxyurea. Good catch!

Are you still taking the 500mg of HU daily?

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Profile picture for Lori, Volunteer Mentor @loribmt

@pineyb Welcome to Connect! Thank you for sharing your experiences and the advice for how you’re coping with PV. Looks like your PCP missed the boat on potentially diagnosing this much earlier. Glad to see it’s under control now, you’re active and enjoying life! It was interesting how the excess iron from supplements was interfering with the hydroxyurea. Good catch!

Are you still taking the 500mg of HU daily?

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@loribmt Thanks!
I’m alternating between 1000 mg and 500 mg daily. My oncologist and I are fiddling around with trying to find the exact right dosage to keep my hematocrit low enough and to keep my energy high enough.

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Profile picture for pineyb @pineyb

@loribmt Thanks!
I’m alternating between 1000 mg and 500 mg daily. My oncologist and I are fiddling around with trying to find the exact right dosage to keep my hematocrit low enough and to keep my energy high enough.

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@pineyb Sometimes it takes a little fine tuning to get the meds in the sweet spot! Sounds like you and your doctor are a great team. Wishing you continued good health!

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Profile picture for Lori, Volunteer Mentor @loribmt

@pineyb Sometimes it takes a little fine tuning to get the meds in the sweet spot! Sounds like you and your doctor are a great team. Wishing you continued good health!

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I'm 78 with Prefibrotic Myelofibrosis. My Hydrox regimen is 1,000 weekdays & 500 weekends.

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Profile picture for jtcat7 @jtcat7

I'm 78 with Prefibrotic Myelofibrosis. My Hydrox regimen is 1,000 weekdays & 500 weekends.

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@jtcat7 Forgot to mention. Diagnosed in July 2025. Platelets were at 1.4 million. Took 2,000 mg Hydroxy daily for a month, to get them down to 480k (goal)

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Profile picture for jtcat7 @jtcat7

@jtcat7 Forgot to mention. Diagnosed in July 2025. Platelets were at 1.4 million. Took 2,000 mg Hydroxy daily for a month, to get them down to 480k (goal)

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with platelets that high your very lucky you didnt have a clot form, TIA or even a stoke. You demonstrate very clearly how important the care we're getting from our hematologist is..my story s long, I written about it several times so won't bring it up again..I'm very lucky to live in Houston and I have a myloprolferatve specialist caring for me..It's important that you're allowed to be a partner in your care and that you educate yourself. another thought, in our situation (the rare incurable blood disease) its very important we find the best care. I'm of the mnd that a large academic institution s a safe place to be..Since you have a place in Minnesota you could go for your initiall visit at MAYO and then most of the rest can be done by zoom visits for venous blood draws orders and if necessary phlebotomies from Mayo by partnering with a doctor were you live.
To the person who mentioned they decided not to take medication for personal medical conditions and only use phlebotomies for care. I don't want to interfere with your thought process..I'm told the medication we take for the PV is to keep phlebotomies to a minimum.. After all in the end the bone marrow constantly making the cells will eventually wear it out as we progress toward mylofibrosis.. Don't take my word for this and I don't know your history but I would be sure you can't take any of the available medications. I'm 3 years In NOW TAKE HYDREA 500 7 DAYS A WEEK with had 6 phlebotomies ..This is after me making a point of my CBC numbers slowly and consistently increasing..I was told it was dehydration..When I first went on hydro I was very upset , it took a while for me to understand but now I take the medication without a thought and when I have my blood drawn for results I'm more worried about having a phlebotomy then the medication.. Again, don't take my word for it however, hydrea is my life line now. I wish you good health...

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Profile picture for jackiecarey @jackiecarey

with platelets that high your very lucky you didnt have a clot form, TIA or even a stoke. You demonstrate very clearly how important the care we're getting from our hematologist is..my story s long, I written about it several times so won't bring it up again..I'm very lucky to live in Houston and I have a myloprolferatve specialist caring for me..It's important that you're allowed to be a partner in your care and that you educate yourself. another thought, in our situation (the rare incurable blood disease) its very important we find the best care. I'm of the mnd that a large academic institution s a safe place to be..Since you have a place in Minnesota you could go for your initiall visit at MAYO and then most of the rest can be done by zoom visits for venous blood draws orders and if necessary phlebotomies from Mayo by partnering with a doctor were you live.
To the person who mentioned they decided not to take medication for personal medical conditions and only use phlebotomies for care. I don't want to interfere with your thought process..I'm told the medication we take for the PV is to keep phlebotomies to a minimum.. After all in the end the bone marrow constantly making the cells will eventually wear it out as we progress toward mylofibrosis.. Don't take my word for this and I don't know your history but I would be sure you can't take any of the available medications. I'm 3 years In NOW TAKE HYDREA 500 7 DAYS A WEEK with had 6 phlebotomies ..This is after me making a point of my CBC numbers slowly and consistently increasing..I was told it was dehydration..When I first went on hydro I was very upset , it took a while for me to understand but now I take the medication without a thought and when I have my blood drawn for results I'm more worried about having a phlebotomy then the medication.. Again, don't take my word for it however, hydrea is my life line now. I wish you good health...

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Great note!! Thanks,
Yes, my new oncologist discovered my cancer but also found diverticulitis. I had also, the day before, fallen off my front porch and broken my spine. She put me in the hospital and on Hydroxy and the hospital treated me for everything at the same time.
I'm in Central Virginia so I'm treated at Virginia Cancer Instotute. I also see University of Virginia's cancer center. Both came to the same conclusion from my biopsy.
Thanks again for your note.

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