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??
I have had pv for years but only discovered it 4 months ago.after lots of blood drops and hydroxyurea my number .
Is now .43.I am taking 6000 hydroxyurea a week and thinking to back off a couple pills a week.I have on iron and have trouble doing anything in a day.was wondering if it is the pv or the hydroxyurea that makes me so weak. Any ideas
I was first alerted in May 2022 that all red blood count were high. No one bothers to look! Now after losing 57 lbs and just trying to find out why? This weight loss has taken place in 2.3 years and still losing despite my own efforts to combat! I’ve had all ct scans from head, neck, chest, abdomen, multiple times. I itch constantly, 4 biopsies and nothing! I also have SLE, COPD, osteoarthritis, and avascular necrosis in right hip going on 6 years! Need hip replacement but until I can get answers Ortho says no to surgery! I’ve seen, 3 general practitioners, 1 internal medicine doctor, gastroenterologist, dermatologist, rheumatologist, pulmonary specialist, hematology oncologist who says no cancer, referred for blood work every three months and 1st appointment not till November! I take baby aspirin despite my greatest fear stroke due to family history and losing my independence! The diagnosis is POLYCYTHEMIA VERA! JAK2 very low, extensive blood work, repeatedly! I’m not wanting an awful diagnosis of a miracle cure just what is it, prognosis and options! I’m fed up here in Dallas Texas with western medicine! Oath to do no harm yet I get nothing! Help!
Hi all! I have recently been diagnosed with PV. My hgb is 16.6 and my hct 46.7. I also have kidney disease with 80% blockage in one. My biggest struggle is potassium, I have had multiple IVs of potassium yet it dissappear from my body. Any suggestions?
Hi, i was diagnosed with primary polycythaemia 2 weeks back, dr has said that my Jak2 test is in the 10%. I have had before being diagnosed HB test that changes every 2 weeks. one week its High next its low. i have been bleed 4 times in the last 6 weeks, with my last bleeding my HB levels was in the normal range, but when they did the bleeding my blood was clotting in the bag and turning into jelly, 2 hours down 189ml and they needed to stop (this was last week) at this stage the dr has me on blood thinner (im allergy to aspirin so they had a issue getting me onto something) . i have been advised that in 3 weeks time more test will take place including bone marrow biopsy, spleen , liver scans and the list continues. my symptoms has gotten a lot worse, dizzyness, headaches , sweats, itchy body, and numbness in feet and hands.. im also struggling to sleep and got bad fever. is it normal to 1st try and thin the blood before doing anything else or start with any other treatment?
I have not started ruxolicinid yet as you have to get approved because the cost.I don't know much about it so for now on 1000 hydroxyurea and blood drops .But lately feeling somewhat better.Not going down to my knees as much and as long as I don't get excited I almost feel normal.Yes I do have some sores in my mouth but much better and on my back side.I guess we all just keep adjusting and hope for the best .Good luck to all of you.
Thank you for your response. I had to take Hydrea for 18 months before I was approved for Jakafi(ruxolitinib) because of the cost also. My oncolgist and pharmicist helped me to qualify. It is a big improvement for me energy and improved the feeling of skin itching. It is a fairly new medicine with no generic alternative yet. Good luck with your treatment.
Hi learn and live! I’ve just been diagnosed a couple of months ago. I’ve been battling some of symptoms for a while. Fatigue is really tough right now. I’ve got other issues including cardiovascular artery issues/stents. Im 54 and currently not working. Im debating on going disability route. My question is have you been able to work with this condition?
Thanks,
Hello themyth, I have been able to work a very physical job. I did and do fatigue more easily. I had to learn to pace myself. It took some time with treatment and medication to get comfortable living with PV/JAK2 . Lots of water, fresh air and exercise even alittle helps mentally and physically. I was diagnosed at 57 after a partial blood clot and its been 5+ years. Hang in there , I have had to slow down but treatment has helped and life is still good. Keep asking questions , many good people here and out there to help.
Make sure you drink minimum of 64 ounces of water taking Hydroxyurea to flush toxins. Also, make sure you see dermatologist as it makes us more prone to skin cancers.
You can go on Chemocare.com, print Hydroxyurea pages. My hematologist gave me this data.
Thank you for the helpful tips on hydration and prevalence of skin cancer. Also appreciate the link for Hydroxurea information. I see it is a Cleveland Clinic site, but my CCF doctor did not tell me about it.
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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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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??
I have had pv for years but only discovered it 4 months ago.after lots of blood drops and hydroxyurea my number .
Is now .43.I am taking 6000 hydroxyurea a week and thinking to back off a couple pills a week.I have on iron and have trouble doing anything in a day.was wondering if it is the pv or the hydroxyurea that makes me so weak. Any ideas
I was first alerted in May 2022 that all red blood count were high. No one bothers to look! Now after losing 57 lbs and just trying to find out why? This weight loss has taken place in 2.3 years and still losing despite my own efforts to combat! I’ve had all ct scans from head, neck, chest, abdomen, multiple times. I itch constantly, 4 biopsies and nothing! I also have SLE, COPD, osteoarthritis, and avascular necrosis in right hip going on 6 years! Need hip replacement but until I can get answers Ortho says no to surgery! I’ve seen, 3 general practitioners, 1 internal medicine doctor, gastroenterologist, dermatologist, rheumatologist, pulmonary specialist, hematology oncologist who says no cancer, referred for blood work every three months and 1st appointment not till November! I take baby aspirin despite my greatest fear stroke due to family history and losing my independence! The diagnosis is POLYCYTHEMIA VERA! JAK2 very low, extensive blood work, repeatedly! I’m not wanting an awful diagnosis of a miracle cure just what is it, prognosis and options! I’m fed up here in Dallas Texas with western medicine! Oath to do no harm yet I get nothing! Help!
Hi all! I have recently been diagnosed with PV. My hgb is 16.6 and my hct 46.7. I also have kidney disease with 80% blockage in one. My biggest struggle is potassium, I have had multiple IVs of potassium yet it dissappear from my body. Any suggestions?
Hi, i was diagnosed with primary polycythaemia 2 weeks back, dr has said that my Jak2 test is in the 10%. I have had before being diagnosed HB test that changes every 2 weeks. one week its High next its low. i have been bleed 4 times in the last 6 weeks, with my last bleeding my HB levels was in the normal range, but when they did the bleeding my blood was clotting in the bag and turning into jelly, 2 hours down 189ml and they needed to stop (this was last week) at this stage the dr has me on blood thinner (im allergy to aspirin so they had a issue getting me onto something) . i have been advised that in 3 weeks time more test will take place including bone marrow biopsy, spleen , liver scans and the list continues. my symptoms has gotten a lot worse, dizzyness, headaches , sweats, itchy body, and numbness in feet and hands.. im also struggling to sleep and got bad fever. is it normal to 1st try and thin the blood before doing anything else or start with any other treatment?
Thank you for your response. I had to take Hydrea for 18 months before I was approved for Jakafi(ruxolitinib) because of the cost also. My oncolgist and pharmicist helped me to qualify. It is a big improvement for me energy and improved the feeling of skin itching. It is a fairly new medicine with no generic alternative yet. Good luck with your treatment.
Hello themyth, I have been able to work a very physical job. I did and do fatigue more easily. I had to learn to pace myself. It took some time with treatment and medication to get comfortable living with PV/JAK2 . Lots of water, fresh air and exercise even alittle helps mentally and physically. I was diagnosed at 57 after a partial blood clot and its been 5+ years. Hang in there , I have had to slow down but treatment has helped and life is still good. Keep asking questions , many good people here and out there to help.
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Helpful -
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2 ReactionsThank you for the helpful tips on hydration and prevalence of skin cancer. Also appreciate the link for Hydroxurea information. I see it is a Cleveland Clinic site, but my CCF doctor did not tell me about it.