Diagnosed with Polycythemia Vera in August. I was given Hdroxyurea

Hello @katrink, While you’re waiting for other members with PV to comment on any difficulties they may have had with their phlebotomies, I’d like to welcome you to Mayo Connect.
Having been newly diagnosed with Polycythemia Vera I’m sure you have plenty of questions about your condition. Here are a couple of articles from credible sources that I think are good introductory educational tools.

~Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850

~MPN Research Foundation: https://mpnresearchfoundation.org/polycythemia-vera-pv/

With your diagnosis of PV is there any mention of a genetic mutation such as JAK2? Are you working with a hematologist?

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.

Katrink, welcome to the Mayo Polycythemia Vera (PV) page. I was diagnosed with PV in 2018 with just a pinch of positivity from Mr. Jak2. I currently take 500 mg of Hdroxyurea once a day in the morning. It does not have much of an effect on my life at age 66. I stay active with my veteran organizations and go to my gym 3 times a week. I believe staying active is a great comfort with this pesky PV. I know no one else that has the same condition as we do. This Mayo Clinic website has been a great comfort to me being able to read and message with others like you and I that have this nasty condition. Other than having less energy in the late afternoon and going to sleep at about 8pm each day, it does not affect me. I wish you all the best. I plan to be around for a long time, living in God's country, known as Kentucky.

You’re not one to give you your blood freely, huh… I’m sure it’s frustrating for you and your phlebotomist!
Hopefully the HU will begin to reduce your red blood count. 2000mg is a hefty daily dosage. There are other medications on the market as well, so if this dosage isn’t successful in reducing blood numbers your doctor might consider one of the alternatives. How often do you have labs?

I'm going in today, but I think it is for iron blood work. Not sure if they will do a cbc panel.
It has been every two weeks that they check that.

I was diagnosed with PV about five years ago and started on 500 mg of HU. Found a competent MD at Mayo who increased the HU to 1000mg daily, low dose aspiring and phlebotomy as needed which for me is when my hematocrit reaches or exceeds 43.
Ever since I was young (Im 77 now) I was very hard to draw blood from and ironically, was very, very anemic until my periods stopped. Unless the nurse/phlebotomist was very patient in locating a vein, they’d end up drawing from my hand with a butterfly. The record for “pokes” was by the so-called “best” at a hospital in Los Angeles. I told him I had never fainted but I thought on his ninth try I might. He went and got an RN who got it on the first try.
The nurses at the Infusion Center at Mayo Phoenix where I go are excellent. Some specially trained using ultrasound to find a good vein. That said, some are better than others (which is the same for the phlebotomists who draw for the lab work), and I think it’s three times that even using ultrasound they have had to switch arms to find a vein. And, as far as slow going, sometimes it flows like water and other times slow as molasses! I do find if I really try drinking more fluids from the night before until just prior, that helps a lot.
I was there just a week ago and laughed when the nurses inserted the needle and said, “You didn’t even flinch!” It’s nothing compared to some procedures.
All things considered, it could always be worse!
Good luck and force fluids!

My diagnosis was in 2021 and I started with a combination of hydroxy and phlebotomy visits every two weeks. On some of those the blood was so thick that we couldn’t get a full draw. After a few months the hydroxy finally kicked in and numbers were down enough that the phlebotomy became much less frequent. I’m now taking 500mg 4x/week and have not needed a phlebotomy for almost two years.

hello,

I have polycythemia Vera JAK2 positive..the JAK2 Positive version is a more severe form..I se a specialist at a major academic institution in Houston. Ive been advise to drink at at least 8 glasses of water throughout the day..Your phlebotomy sounds like dehydrated or sluggish thick blood.. I'm 77 and been treated for it for 3 years..I'm on hydra 500mg 7 days a week, baby asa and now since I had a TIA I'm also taking praxada...I don't have a problem with the hydra anymore, ive learned to eat small meals, take the hydra in the morning with a little food ..A cup of black coffee in the morning and then only water the rest of the day. I do get fatigued and have some insomnia but I am 77.. Ive had 6 phlebotomies over 3 years without issues. I haven't had any illnesses over the 3 years..I was very upset when first diagnosisedt but I learned to educate myself, understand the illness and if I can't exercise because of fatigue so be it. Hope some of this helps....Feel free to contact me anytime..

@jackiecarey
My husband is dealing with the same issues. Your information was very insightful. I have also read that drinking water is very important for this condition. How did you know that you are JAK2 "positive"? What are the other versions? Why is the positive version worse?

@kjoauch Jak2 positive can be diagnosed from a single lab test. It’s very expensive and takes a few weeks for results usually. It’s means you actually have the mutation in your bone marrow and will be something you have for life. If that test is negative, most likely you have some sort of disease elsewhere that is causing your labs to be high. Sometimes they can find that and treat it and you’re done. Other times people have PV and are not JAK2 positive and still live with it. Just like some of us have high platelets, like myself and others do not. If you have high platelets you have to take meds for life to avoid clots, strokes and heart attacks. I’m in this for almost three years now. PV and JAK2 Positive. I’m 59 now and never had health issues or good meds. Good luck!