First time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Good morning, @serenity55 I love your @name of Serenity. It’s a word in my morning affirmations…and what we all wish for in our lives. ☺️
Phlebotomies can be used in conditions where there is an elevated hemoglobin (too many red blood cells) and having a high hematocrit number which measures the portion of red blood cells in your body.
Blood is removed from the body to lower that count to normal. Too many red blood cells can cause a host of issues, the biggest concern being blood clots. It can also lead to other blood cancers. So, I’m scratching my head a little as to why your hematologist isn’t concerned about your condition.
My concern is that without a diagnosis just removing the excess blood from you body isn’t telling you the entire story of what’s causing the higher manufacturing in the first place.
Have you had another other tests run besides your CBC to check for a genetic mutation such as JAK2 which can cause Polycythemia Vera? Has your hematologist suggested a daily aspirin to avoid clotting? How often do you see him for blood work?
First time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
My phlebotomies have been all over the place , at one point I went 4 months without one. Another time 2 months. Is that the HU? Who knows at this point? Stay well , good luck🙏🏻
I’m on my third year with PV. Took HU for six months before developing an allergy to it. Now on my second year taking Jakafi. Blood check every month with phlebotomy as needed. Usually two to three months. Some people are able to go much longer taking Jakafi.
I think I meant to say some sort of routine. Currently doing labs every other week and that determines if I need it. I’m just assuming it kind of levels off at some point? Like an average length of time between phlebotomies? Thanks for your thoughts and keep me posted as well 😊
My phlebotomies have been all over the place , at one point I went 4 months without one. Another time 2 months. Is that the HU? Who knows at this point? Stay well , good luck🙏🏻
My phlebotomies are never routinely scheduled. We do blood work every month and if not aren’t great we do one. But I am continually on HU. Second guessing that at the moment. Not sure why that drug. I’ve had two dr opinions but may seek another. Good luck to you and keep me posted.
I think I meant to say some sort of routine. Currently doing labs every other week and that determines if I need it. I’m just assuming it kind of levels off at some point? Like an average length of time between phlebotomies? Thanks for your thoughts and keep me posted as well 😊
I was just diagnosed with PV in January. Same routine. Weekly phlebotomies and then bi weekly labs and put on hydroxyurea b/c my platelets jumped over 600 after 4-5 weeks. I was wondering the same thing about dropping the drug and doing monthly phlebotomy? I am 56 and plan on asking once I have a regular “schedule” for the phlebotomies. I have very sensitive gums, swollen like small sores and DID not have them until on the drug. I was told to wait and see if my body should adjust? Also after just a few weeks, I have small brown spots on my skin which is also related to this med. Dermatologist said they are not dangerous, just cosmetic.
My phlebotomies are never routinely scheduled. We do blood work every month and if not aren’t great we do one. But I am continually on HU. Second guessing that at the moment. Not sure why that drug. I’ve had two dr opinions but may seek another. Good luck to you and keep me posted.
I have been diagnosed with PV for over a year now. Initially I did phlebotomies till my count was controlled and now I am on hydroxyurea daily. I now get Phlebotomies about every 4-5 months. I’m concerned being on this drug. I am not sure why I can’t just get the phlebotomies monthly. I have asked my dr but he says because of my age, which is 65, I need the drug also. I am a very active person, still run half marathons and work out 6 days a week. I also eat healthy and weigh 133 and am 5’7”. I find I have other odd things going on, sores in my mouth, bruising, fatigue, poor sleep. I’m not sure if these are medicine related or disease related. I’ve tried to lose a few a pounds and can’t. Any body else have some insight on this?
I was just diagnosed with PV in January. Same routine. Weekly phlebotomies and then bi weekly labs and put on hydroxyurea b/c my platelets jumped over 600 after 4-5 weeks. I was wondering the same thing about dropping the drug and doing monthly phlebotomy? I am 56 and plan on asking once I have a regular “schedule” for the phlebotomies. I have very sensitive gums, swollen like small sores and DID not have them until on the drug. I was told to wait and see if my body should adjust? Also after just a few weeks, I have small brown spots on my skin which is also related to this med. Dermatologist said they are not dangerous, just cosmetic.
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Good morning, @serenity55 I love your @name of Serenity. It’s a word in my morning affirmations…and what we all wish for in our lives. ☺️
Phlebotomies can be used in conditions where there is an elevated hemoglobin (too many red blood cells) and having a high hematocrit number which measures the portion of red blood cells in your body.
Blood is removed from the body to lower that count to normal. Too many red blood cells can cause a host of issues, the biggest concern being blood clots. It can also lead to other blood cancers. So, I’m scratching my head a little as to why your hematologist isn’t concerned about your condition.
I’ve posted a link to the Mayo Clinic website so you can read a little more about Polycythemia Vera. https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
My concern is that without a diagnosis just removing the excess blood from you body isn’t telling you the entire story of what’s causing the higher manufacturing in the first place.
Have you had another other tests run besides your CBC to check for a genetic mutation such as JAK2 which can cause Polycythemia Vera? Has your hematologist suggested a daily aspirin to avoid clotting? How often do you see him for blood work?
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2 ReactionsFirst time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Thank you.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
I’m on my third year with PV. Took HU for six months before developing an allergy to it. Now on my second year taking Jakafi. Blood check every month with phlebotomy as needed. Usually two to three months. Some people are able to go much longer taking Jakafi.
My phlebotomies have been all over the place , at one point I went 4 months without one. Another time 2 months. Is that the HU? Who knows at this point? Stay well , good luck🙏🏻
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Like -
Helpful -
Hug
1 ReactionI think I meant to say some sort of routine. Currently doing labs every other week and that determines if I need it. I’m just assuming it kind of levels off at some point? Like an average length of time between phlebotomies? Thanks for your thoughts and keep me posted as well 😊
My phlebotomies are never routinely scheduled. We do blood work every month and if not aren’t great we do one. But I am continually on HU. Second guessing that at the moment. Not sure why that drug. I’ve had two dr opinions but may seek another. Good luck to you and keep me posted.
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Like -
Helpful -
Hug
1 ReactionI’m in NJ also. What dr do you see ?
I was just diagnosed with PV in January. Same routine. Weekly phlebotomies and then bi weekly labs and put on hydroxyurea b/c my platelets jumped over 600 after 4-5 weeks. I was wondering the same thing about dropping the drug and doing monthly phlebotomy? I am 56 and plan on asking once I have a regular “schedule” for the phlebotomies. I have very sensitive gums, swollen like small sores and DID not have them until on the drug. I was told to wait and see if my body should adjust? Also after just a few weeks, I have small brown spots on my skin which is also related to this med. Dermatologist said they are not dangerous, just cosmetic.