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My mom has Polycythemia Vera: Can PV be managed without phlebotomies?
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My mom (74) was diagnosed with PV (aug 2024). Hemotologist believes it may have had PV since 2022. She did the Jak2 test and she’s positive. She did the bone marrow biopsy and she’s done two phlebotomies and started HU medication 500mg x 3 a week. Also takes baby aspirin daily. The first phlebotomy she tolerated. The second knocked her socks off. Doc stopped phlebotomy to see how the medication works only. She just did blood work and hemacrit is increasing (.49), doc targeting under .45. In Oct 2024 it was .43
I suspect that doc will increase meds.
Anyone else in a similar situation? Can PV be managed without phlebotomies?
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Thank you and sorry you are also dealing with this. My mom was diagnosed end of august - so get a bit before you were. These things are never fun but nice to know there is a forum where folks can share their stories.
@tleona3024, I'd like to add my welcome. You may wish to also use the group search to find related discussions like this one:
- Polycythemia Vera: Just been diagnosed
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
See all https://connect.mayoclinic.org/search/discussions/?search=Polycythemia%20Vera
How is your mom doing?
Once they get the meds at the correct dosage to keep her numbers down, usually phlebotomies become
Less frequent. I was at every month, then eight weeks and now after a year and a half on the meds, I went past four months! The dosage is likely to change here and there depending on her numbers but I haven’t heard of anyone with PV not needing them. Some can go without meds if their platelets are stable but still need the blood out. Hang in there. I wish I could drop the Hydroxyurea and just get the phlebotomies but my platelets jump as soon as it’s lowered. Hang in there!
I believe PV can be managed without phlebotomies. I know this as I have had PV since 2018 and I have the complementary JAK2 at age 65. I have never had a phlebotomy. I am on HU 500mg once a day and take the 81mg baby aspirin. That is all. I may be lucky in that I have a very low level PV if that is possible. I used to donate blood to the Red Cross. I cannot do that anymore. I wish you the best, from the Kentucky Bluegrass.
Ive had PV for 18 months, at least formally diagnosed ..I noticed my Red Cells increasing slowly over time and mentioned it to my family Doctor. He told me I was dehydrated on several occasions. Finally my right eye went black for 2 minutes and it took 2 minutes for the sight to return..I'm a retired trauma nurse and knew it was a pre stroke so I went to the Emergency Room..They did every test known to man and found nothing. When I returned home I looked at my blood work and noticed all my red cells were well over normal now. I decided enough and went to a Hematologist. As soon as I walked in his office he knew what it was, PV..I had never heard of it so he went on to explain and drew blood for the JAK2..The diagnosis is quite rare in fact I ask medical people if they've heard of it and 90 % say no. My JAK2 was positive..This Hematologist was not a good fit for me so I went to MDAnderson, they insist on doing all the blood work and bone marrow over and again everything was positive a second time. . I'm 77 and had the hydrox dose changed several times. Ive had 2 phlebotomies and did fine. I was very upset at first, read everything. (You Tube has tons of info from academic institutions) I Could find to educate myself..MDAnderson has allowed me to partner in my care and this is what Ive taken from my experience. It takes time to get used to this diagnosis, it takes time to get the right dose of hydrox, it will change (at least mind has) drink about 90 oz of water every day, exercise even when you don't feel like it, eat healthy, and lastly try to stay positive. As I walk through MDAnderson I realize even though I have PV, It easily could be a lot worse...Good luck to everyone and be good to yourself...
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1 ReactionSorry it took your expertise to get you to the right specialist for diagnosis. I have one question. Did they insist on a bone marrow test? PV can be diagnosed solely on your labs and JAK2 positive result. Treatment is the same and I feel like b/c this is so rare they are doing it more for their studies and for the cost. My oncologist said he was fine with me not having the bone marrow test. Unless I incur severe issues, I don’t intend on it.
I was wondering the same thing- that it took Jackie to do her own research.
For my mom (we are in Canada), it’s recommended to do the biopsy. It was uncomfortable for her, but manageable. It was good so show any advancements. But it was solely her choice. The positive jak2, high hemoglobin are enough markers for PV
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1 ReactionA lot of folks talk about platelets, but my mom’s platelets are normal. Only hemoglobin and hemacrit were high
The meds are usually for platelets so if it’s just the hemoglobin and hematocrit the only way to control that is with phlebotomies is what my hematologist said. I asked him if I could stop the hydroxyurea and he said it will lower my platelets, which were over 800, so I had to take it. The phlebotomies alone can control the other two. Honestly, better if she can skip the meds.
I have PV secondary, Jak2 positive. I was on Hydroxyurea for about 8 months, but side effects were severe enough I was switched to Jakifi. My understanding was Hydroxyurea suppresses all blood cell lines, but Jakifi is more targeted to red blood cells. My counts were finally down enough I can stop the phlebotomizes.
This week I learned red blood cell procurers will become platelets of you're low on iron.