Hello @atir, welcome to Connect. I'd like to invite @chadknudson, @mwear, and @juiceinjc to this discussion as they have all mentioned having polycythemia vera here on Connect. @atir, if you don't mind me asking, what sort of feedback are you looking for from other members? Were you recently diagnosed?
I have been on Hydroxturea for three weeks and feel OK generally but have two-month-old lesions on arm, back, legs which are very itchy. A new one on my eyelid is a real concern because it is increasing in size daily. It is very itchy but do not touch it but at night I may have.
Any recommendated remedy would be appreciated.
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.
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.
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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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.
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.
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 @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 @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
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 was recently diagnosed withnpolycythemia vera
I have been on Hydroxturea for three weeks and feel OK generally but have two-month-old lesions on arm, back, legs which are very itchy. A new one on my eyelid is a real concern because it is increasing in size daily. It is very itchy but do not touch it but at night I may have.
Any recommendated remedy would be appreciated.
Hi Holbrook,
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.
Best wishes, Eileen
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4 ReactionsI’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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Helpful -
Hug
3 ReactionsWas 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 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
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?
Yes get results this Wednesday.
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
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.