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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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.
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.
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?
Thanks @mikepv. It is nice to know we have support with this site. I am continuing to ask lots of questions. I am hanging in there but it is nice to know I am not alone in this fight!
This site is very helpful however you may also like MPN Interterferon Forum. This Facebook site has been a great support for me. No medical advice but thousands of others who also have PV sharing support.
Hello albertedward, was wondering what your new drug was ? I recently started Jakafi and it also is expensive but i tolerate Jakafi better than Hydrea.
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.
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.
Hello albertedward, was wondering what your new drug was ? I recently started Jakafi and it also is expensive but i tolerate Jakafi better than Hydrea.
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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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3 ReactionsHi 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 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.
I was recently diagnosed withnpolycythemia vera
This site is very helpful however you may also like MPN Interterferon Forum. This Facebook site has been a great support for me. No medical advice but thousands of others who also have PV sharing support.
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.
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.
Same with me