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?
Hello, I have had PV with JAK2 for about 5 years. I work and live a very active life. It took about 2 months to get a good system of phlebotomies and started Hydrea to get numbers controled. I now am on Jakafi after 3 years and phlebotomies 2-4 a year. Overall short term its not bad. I suggest to cut back work and enjoy life without stress and working too hard. It has been a managable disease without too much change for me. I get tired a little if I over do it but otherwise no worries. Good luck, stay positive all of you
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,
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.
Recently diagnosed in November with pv/et, jak2+.
Originally on hydrox 1000 daily with phlebotomy x 3 (as needed for hematocrit over 42). Not many side effects from drug, but platelets got too low and had some bleeding problems. Just get very tired but I’m 82. Now on 500 hydrox 3 times a week and levels are fairly stable…have not needed phlebotomy in a month. Was getting weekly cbc, now every other week. Trying to be patient while I get stabilized. I see a hematologist/oncologist at the Cleveland Clinic. I find this forum very helpful. Thanks for the warning about sun exposure …planning Florida trip in May.
I’ll second the recommendation regarding exposure to the sun… I’ve been in Florida for a week and it’s long sleeves, sunscreen, and wearing hats when the sun is shining.. I bike and swim daily later in the day to avoid the sun when it is at its strongest… It’s not even been cloudy since I have been here(southwest Florida).. FYI diagnosed with PV spring of 2021 and on higher dose of HU( 8500 Mg per week)..
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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?
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,
Myth
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.
I’ll second the recommendation regarding exposure to the sun… I’ve been in Florida for a week and it’s long sleeves, sunscreen, and wearing hats when the sun is shining.. I bike and swim daily later in the day to avoid the sun when it is at its strongest… It’s not even been cloudy since I have been here(southwest Florida).. FYI diagnosed with PV spring of 2021 and on higher dose of HU( 8500 Mg per week)..
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