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...
I’m a pediatrician working for more than 27 years.I have been diagnosed as a polycythemia patient 10 years ago with ability to mention either a primary or secondary
I did everything for diagnosis
Erythropoietin
Sonar kidneys
Bone marrow biopsy
MRI brain
Jack test
Everything and nothing is there
What I used to do is venisection every 3 month when hematocrit ratio exceeds 52 and when HB reaches 17gm
The best thing I noticed that vitamin C delays the intervals between blood donation
Now I’m taking Vitamin C 1 gm daily regulary for 6th months
Good news that HCT back to 48 without venisection for 2 times 3 months apart
Also, I am in no way a medical professional. However since my journey began of being evaluated for PV in 2015, I have become a 'professional' researcher in the disease. I have spent countless hours researching since 2015. I am only trying to share what I have learned and I truly wish you all the very best.
@gjb1 - My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.
As a follow up to my question, I searched for diagnostic criteria for PV (since they kept emphasizing that DIAGNOSTIC criteria is a hematocrit over 32." They kept using "32" as some magical number. I know that internet resources aren't always accurate, but EVERY paper I have found in the peer-reviewed literature states that one of the major diagnostic criteria for PV is: "Hemoglobin >16.5 g/dL in men and >16 g/dL in women, or hematocrit >49% in men and >48% in women, or red cell mass >25% above mean normal predicted value" (reminder, my hemoglobin today was 10.7, and hematocrit 33, my red cell mass has never been studied." So, where did this magical number of 32 come from? And, does it make sense considering that value would make me anemic (not polycythemic)? Not sure if this is the case, but OLD criteria (from 1970 group), included as one of the major diagnostic criteria as "Category A criteria are as follows: Total red blood cell mass ≥36 mL/kg in males or ≥32 mL/kg in females" I'm wondering if I was literally just diagnosed with PV based on the WRONG measurement (as I have never had red cell mass measured), from an old set of criteria. This would explain the PV diagnosis, which is seemingly contradictory with my (albeit slightly) anemic hemoglobin/hematocrit. Any thoughts on this explanation, or, just in general about if/ow a definitive diagnosis of PV can be made based on just the JAK2 mutation and LOW RBCs?
@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I have no idea where that came from. As of your post that I am responding to, where your hemoglobin was 10.7 and hematocrit 33, both of those results are below normal. For a man and for a woman. Polycythemia vera diagnostic criteria includes one of which that is a highly elevated hemoglobin and hematocrit. Which you do not have. However, another diagnostic criteria for PV is the JAK2 mutation. I'm guessing your PV diagnosis was based solely on the JAK2 mutation, which would be inaccurate according to your hemoglobin & hematocrit levels. Throughout my extensive research into PV and myeloproliferative disorders in general, your particular results seem to point more towards essential thrombocythemia (ET), or primary myelofibrosis (PMF). Your low hemoglobin and hematocrit point away from PV. The diagnostic criteria for PV was recently-ish revised in 2016, and still your low hemoglobin/hematocrit levels point away from PV. Bless you & fight the good fight! Just trying to provide some (hopefully) helpful information. 🙂
Hi,
Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted on bone marrow biopsy. Had my first phlebotomy done Friday as well. Hemoglobin is 18.8, Hematocrit 58.9. Have some of the symptoms, fatigue, bruising, shortness of breath, etc. My first EPO was normal, but late Friday got a repeat back showing high 61. Now I'm not to sure what's going on! Hopefully will speak with the Hematologist on Monday. Haven't gotten the repeat JAK2 back yet either. Just wanted to check in!
@gjb1 - My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.
Hi,
Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted on bone marrow biopsy. Had my first phlebotomy done Friday as well. Hemoglobin is 18.8, Hematocrit 58.9. Have some of the symptoms, fatigue, bruising, shortness of breath, etc. My first EPO was normal, but late Friday got a repeat back showing high 61. Now I'm not to sure what's going on! Hopefully will speak with the Hematologist on Monday. Haven't gotten the repeat JAK2 back yet either. Just wanted to check in!
I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).
Thanks Chad, my threshold is 45 as well. I maintain a very healthy diet as well. I am very fortunate to have a wife that is a RN and yes she stays on my A$$ daily about my intake and exercise. I try to do everything as right as I can but nothing seems to work. There has been a lot of talk with my Drs about starting the Hydroxyurea and I am fine with that. I am just getting a little tired of the wait and see approach as well as all the phlebotomies. I guess I'm also looking for other avenues of therapy. The last thing I want is to throw another clot.
Hello to all, I am new to this and trying to get a better understanding of PV and the wait and watch scenario vs the let treat and move forward. In late 2017 I had a venous sinous thrombosis on the left side of my brain. After 5 days in ICU it was resolved. During my stay the Drs had decided that I had PV. Thats fine, lets treat it and move forward, Im fine with that, after all I have already kicked the crap out of Oliogostrocytoma a few times. My Hemat was at 62 My Hemo was at 18 RBC elevated WBC elevated etc. I had a few Phlebotomies while I was in the hospital, no big deal. I've done all of my many follow up visits with both primary and hematologist, extensive testing with bone marrow biopsy, special testing that only Mayo can do for genetic testing and everything comes up JAK2 Negative, but yet my number continue to climb every 10-14 days. Within the last 16 months I have had 28 Phlebotomies, which I think is a lot. I have done some research on my own and found were you can be PV Positive with a JAK2 Negative test result. I am lookin for a little guidance on next steps, any help is greatly appreciated. Jeff
I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).
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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...
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Like -
Helpful -
Hug
1 ReactionI’m a pediatrician working for more than 27 years.I have been diagnosed as a polycythemia patient 10 years ago with ability to mention either a primary or secondary
I did everything for diagnosis
Erythropoietin
Sonar kidneys
Bone marrow biopsy
MRI brain
Jack test
Everything and nothing is there
What I used to do is venisection every 3 month when hematocrit ratio exceeds 52 and when HB reaches 17gm
The best thing I noticed that vitamin C delays the intervals between blood donation
Now I’m taking Vitamin C 1 gm daily regulary for 6th months
Good news that HCT back to 48 without venisection for 2 times 3 months apart
-
Like -
Helpful -
Hug
2 ReactionsAlso, I am in no way a medical professional. However since my journey began of being evaluated for PV in 2015, I have become a 'professional' researcher in the disease. I have spent countless hours researching since 2015. I am only trying to share what I have learned and I truly wish you all the very best.
-
Like -
Helpful -
Hug
2 ReactionsGeneral 'normal' range for EPO is 4-19 mU/mL
A high EPO is indicative of secondary polycythemia. Those with polycythemia vera (primary polycythemia) have low EPO levels. Cheers! 🙂
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1 Reaction@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I have no idea where that came from. As of your post that I am responding to, where your hemoglobin was 10.7 and hematocrit 33, both of those results are below normal. For a man and for a woman. Polycythemia vera diagnostic criteria includes one of which that is a highly elevated hemoglobin and hematocrit. Which you do not have. However, another diagnostic criteria for PV is the JAK2 mutation. I'm guessing your PV diagnosis was based solely on the JAK2 mutation, which would be inaccurate according to your hemoglobin & hematocrit levels. Throughout my extensive research into PV and myeloproliferative disorders in general, your particular results seem to point more towards essential thrombocythemia (ET), or primary myelofibrosis (PMF). Your low hemoglobin and hematocrit point away from PV. The diagnostic criteria for PV was recently-ish revised in 2016, and still your low hemoglobin/hematocrit levels point away from PV. Bless you & fight the good fight! Just trying to provide some (hopefully) helpful information. 🙂
-
Like -
Helpful -
Hug
1 Reaction@gjb1 - My EPO is high as well. In my case the high EPO makes sense, given my hematocrit is anemic. I'm still confused by my PV diagnosis, given now the only criteria I meet is that I have the JAK2 mutation. Feels a bit to me like an "eeny-meeny-miney-mo" diagnosis. It could be possible that I'm in early stage PV, but, currently there is no bone marrow biopsy to confirm that, and two of the bloodwork parameters (hematocrit/hemoglobin and EPO levels) are contradictory to the diagnostic criteria.
Hi,
Just diagnosed with Polycythemia Vera on Friday. Negative JAK2 test, but other genetic changes noted on bone marrow biopsy. Had my first phlebotomy done Friday as well. Hemoglobin is 18.8, Hematocrit 58.9. Have some of the symptoms, fatigue, bruising, shortness of breath, etc. My first EPO was normal, but late Friday got a repeat back showing high 61. Now I'm not to sure what's going on! Hopefully will speak with the Hematologist on Monday. Haven't gotten the repeat JAK2 back yet either. Just wanted to check in!
Thanks Chad, my threshold is 45 as well. I maintain a very healthy diet as well. I am very fortunate to have a wife that is a RN and yes she stays on my A$$ daily about my intake and exercise. I try to do everything as right as I can but nothing seems to work. There has been a lot of talk with my Drs about starting the Hydroxyurea and I am fine with that. I am just getting a little tired of the wait and see approach as well as all the phlebotomies. I guess I'm also looking for other avenues of therapy. The last thing I want is to throw another clot.
-
Like -
Helpful -
Hug
1 ReactionI've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).
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Like -
Helpful -
Hug
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