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.
Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high hematocrit number. With the tightly packed red blood cells, blood movement can become restricted, essentially starving your body for oxygen. That’s why you have such extreme fatigue. Having the phlebotomy removes some of those excess red blood cells to bring that number down again.
Some important things to note, is that you need to stay hydrated. The rule of thumb is about 11 cups of fluids per day, it doesn’t mean just water.
With your phlebotomies, it’s also suggested to drink quite a bit of water the day before and the day of the procedure. Then have a ‘saline’ IV chaser immediately after the phlebotomy to help replenish your electrolytes and fluids.
Was there a diagnosis given with your PV? Did you have any genetic testing run for the JAK2 gene?
The genetics test was negative. I do remember that. This has been a blur for me. Really shocked me. I’m still trying to gather as much information as possible. I check a lot of the boxes with things that go with it. Scary
Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high hematocrit number. With the tightly packed red blood cells, blood movement can become restricted, essentially starving your body for oxygen. That’s why you have such extreme fatigue. Having the phlebotomy removes some of those excess red blood cells to bring that number down again.
Some important things to note, is that you need to stay hydrated. The rule of thumb is about 11 cups of fluids per day, it doesn’t mean just water.
With your phlebotomies, it’s also suggested to drink quite a bit of water the day before and the day of the procedure. Then have a ‘saline’ IV chaser immediately after the phlebotomy to help replenish your electrolytes and fluids.
Was there a diagnosis given with your PV? Did you have any genetic testing run for the JAK2 gene?
Was diagnosed 2 months ago. My hematocrit was 64. Has anyone had bruising around spleen area? I’ve saw a few pics online. I go for second phlebotomy this week. Fatigue is kicking my tail. I’m 54. Not working at the moment. I have no endurance.
Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high hematocrit number. With the tightly packed red blood cells, blood movement can become restricted, essentially starving your body for oxygen. That’s why you have such extreme fatigue. Having the phlebotomy removes some of those excess red blood cells to bring that number down again.
Some important things to note, is that you need to stay hydrated. The rule of thumb is about 11 cups of fluids per day, it doesn’t mean just water.
With your phlebotomies, it’s also suggested to drink quite a bit of water the day before and the day of the procedure. Then have a ‘saline’ IV chaser immediately after the phlebotomy to help replenish your electrolytes and fluids.
Was there a diagnosis given with your PV? Did you have any genetic testing run for the JAK2 gene?
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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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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.
The genetics test was negative. I do remember that. This has been a blur for me. Really shocked me. I’m still trying to gather as much information as possible. I check a lot of the boxes with things that go with it. Scary
Yes get results this Wednesday.
Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high hematocrit number. With the tightly packed red blood cells, blood movement can become restricted, essentially starving your body for oxygen. That’s why you have such extreme fatigue. Having the phlebotomy removes some of those excess red blood cells to bring that number down again.
Some important things to note, is that you need to stay hydrated. The rule of thumb is about 11 cups of fluids per day, it doesn’t mean just water.
With your phlebotomies, it’s also suggested to drink quite a bit of water the day before and the day of the procedure. Then have a ‘saline’ IV chaser immediately after the phlebotomy to help replenish your electrolytes and fluids.
Was there a diagnosis given with your PV? Did you have any genetic testing run for the JAK2 gene?