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.
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 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 have just been diagnosed with pv and didn't know anything about it my primary doctor just got up and walked out of her office after ordering a bunch of test with specialist a urologist about a biopsy and then a surgery the nurse came in and said I could not have biopsy surgery because I was having a allergic reaction and doctor said it wasn't a reaction I had PV I had no idea what it was until I got home and there was a letter in mailbox saying I had a appointment at Kirkland Cancer center I called them and said they made a mistake about the appointment they informed me that it was no mistake now mind you I still had no idea what it was. After going to my first appointment I just found only after several weeks and trying to find a new primary doctor.I was just wondering when I was between the age 8 to maybe 10 I was hospitalized for several weeks or maybe a month or so they thought at the time I had leukemia after several weeks the final diagnosis was a hemophiliac a free bleeder I am just wondering if any this was connected I was hospitalized at the Cleveland clinic at that time and am 60 now both of my parents have passed so I really am not sure about the dates and all the facts but this is all that I have.My skin has always been splotchy and the doctor's never knew why until I went to the oncologist .Does anyone know??
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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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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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Helpful -
Hug
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.
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.
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Like -
Helpful -
Hug
2 ReactionsHi everyone
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 have just been diagnosed with pv and didn't know anything about it my primary doctor just got up and walked out of her office after ordering a bunch of test with specialist a urologist about a biopsy and then a surgery the nurse came in and said I could not have biopsy surgery because I was having a allergic reaction and doctor said it wasn't a reaction I had PV I had no idea what it was until I got home and there was a letter in mailbox saying I had a appointment at Kirkland Cancer center I called them and said they made a mistake about the appointment they informed me that it was no mistake now mind you I still had no idea what it was. After going to my first appointment I just found only after several weeks and trying to find a new primary doctor.I was just wondering when I was between the age 8 to maybe 10 I was hospitalized for several weeks or maybe a month or so they thought at the time I had leukemia after several weeks the final diagnosis was a hemophiliac a free bleeder I am just wondering if any this was connected I was hospitalized at the Cleveland clinic at that time and am 60 now both of my parents have passed so I really am not sure about the dates and all the facts but this is all that I have.My skin has always been splotchy and the doctor's never knew why until I went to the oncologist .Does anyone know??