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.
Has anyone had issues with low blood pressure following phlebotomies? My blood pressure has been bottoming .out. My blood tests are still high and withdrawing 500 ccs due to my numbers not improving. Went to my PCP a few days following phlebotomy and my BP was 84/55. It is scary because I am so drained and cannot do anything. By the time I feel better, my blood is high again and I feel tired and suffer from my Polycythemia symptoms. Anyone experiencing this?
Hi Tiger, I cannot stress enough that you must see an MPN specialist. I am a patient of Dr. Camoriano at Mayo Phoenix, and I love him. But, there are many others around the country who are equally as informed. I have been on interferon for 11 years. If you do some internet research, you will find many resources. Best of luck!
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!
Do any of you who have been diagnosed with PV experience flushing of your skin? Specifically face, neck and chest areas. Sometimes spreading down the arms? Like this...
Hi there! I have flushing of the face and arms but it is splotchy. I have it every morning. I am suffering with the itchiness now too. Unfortunately I have not found anything to help with this. You are not alone with this symptom.
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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 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
Has anyone had issues with low blood pressure following phlebotomies? My blood pressure has been bottoming .out. My blood tests are still high and withdrawing 500 ccs due to my numbers not improving. Went to my PCP a few days following phlebotomy and my BP was 84/55. It is scary because I am so drained and cannot do anything. By the time I feel better, my blood is high again and I feel tired and suffer from my Polycythemia symptoms. Anyone experiencing this?
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!
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Like -
Helpful -
Hug
1 ReactionHi there! I have flushing of the face and arms but it is splotchy. I have it every morning. I am suffering with the itchiness now too. Unfortunately I have not found anything to help with this. You are not alone with this symptom.