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.
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 also have sores in my mouth. As for poor sleep, I am fortunate that I can legally purchase cannabis gummies here in NJ. Helps me sleep, plus it gets me happy. Lol
I had minor surgery in March 2019 and told there was something wrong with my blood count. It took until Feb. 2020 that I was told by my Hematologist that I have PV. I was told to take Hydroxyurea 500 mg once a day. After reading about it I decided not to consume what I call the 'Poison Pill' as you are not suppose to touch it with your bare hands. After 1.5 years I finally decided to try it only because my red blood count was 2057, (best range is 190-400) and I was experiencing fatigue. I am a devotee of healthy eating and holistic meds by taking 10 -18 supplements a day so I have never experienced the other side effects of PV. I did not have any bad side effects except catching a sinus virus for the first time since taking the PP has been devastating, I've never been so sick with a silly cold as now. I stopped taking the PP but will resume as soon as my ear infection and sinus clears up. BTW, I'm 75 years young. Also FYI, try fresh, organic ginger, about 1/2 ounce every day for joint pain/arthritis.
I do not do big pharma either! Blood draws vs poison! I’ll do blood draws! I live in big city and can’t get help after 2.5 years! No blood draws to date and no hematology till 11/2023!
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?
Hydroxyurea seems to impact people in different ways... I have been on it since April 2021 and am very active as well... I can't run anymore due to a bad knee but bike, swim(when it's warm enough), and walk and am at a good weight for me.. Initially, I noticed pain in my big toes on my feet... That has long since gone away.. I have a heightened sensitivity to cold weather; especially in my hands... Anything under 45 degrees requires gloves ... That still persists to this day.. I think that these symptoms are/were from the PV and not the HU.. I could easily lose weight if I wanted to, but I am doing very well at my current weight and cannot at this point in time definitively tie my taking of HU to any noticeable symptoms.. I guess I have been "lucky" so far in that regard... I don't like the idea of taking such a potent pill and have no idea if there could be changes in my ability to tolerate it in the future.. For now, it seems to be working for me.. I have monthly blood tests to make sure HCT, HGB, etc, are at acceptable levels... FYI I am 68 male, and currently taking 8500 mg HU per week.. Best to you...
I, also, have PV and have significant joint pain, especially painful feet. Originally thought it was plantar fasciitis but apparently it is related to PV.
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 informed by my oncologist that I have PV and my RBC is high. I have severe joint pain and cannot move my legs and palms. Do anyone experience the same?
Thanks in advance
I, also, have PV and have significant joint pain, especially painful feet. Originally thought it was plantar fasciitis but apparently it is related to PV.
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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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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.
I also have sores in my mouth. As for poor sleep, I am fortunate that I can legally purchase cannabis gummies here in NJ. Helps me sleep, plus it gets me happy. Lol
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Hug
1 ReactionYes. I’m on hydroxyurea daily
I do not do big pharma either! Blood draws vs poison! I’ll do blood draws! I live in big city and can’t get help after 2.5 years! No blood draws to date and no hematology till 11/2023!
Hydroxyurea seems to impact people in different ways... I have been on it since April 2021 and am very active as well... I can't run anymore due to a bad knee but bike, swim(when it's warm enough), and walk and am at a good weight for me.. Initially, I noticed pain in my big toes on my feet... That has long since gone away.. I have a heightened sensitivity to cold weather; especially in my hands... Anything under 45 degrees requires gloves ... That still persists to this day.. I think that these symptoms are/were from the PV and not the HU.. I could easily lose weight if I wanted to, but I am doing very well at my current weight and cannot at this point in time definitively tie my taking of HU to any noticeable symptoms.. I guess I have been "lucky" so far in that regard... I don't like the idea of taking such a potent pill and have no idea if there could be changes in my ability to tolerate it in the future.. For now, it seems to be working for me.. I have monthly blood tests to make sure HCT, HGB, etc, are at acceptable levels... FYI I am 68 male, and currently taking 8500 mg HU per week.. Best to you...
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1 ReactionAre you on meds? I’m on hydroxyurea for my PV and also have terrible joint pain.
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?
-
Like -
Helpful -
Hug
1 ReactionI, also, have PV and have significant joint pain, especially painful feet. Originally thought it was plantar fasciitis but apparently it is related to PV.