Thank you for moving the post! And yes, I try to over do it a lot of times and I can’t keep up with my fiancé or friends when we are active. I have found that walking works for me. I will use my inhaler and wait it out if I can’t catch my breath, but a brisk walk has helped a lot.
I am a 25 year old female and was diagnosed with PV about two weeks ago. I believe it is more of a preliminary diagnosis since my hematology/oncology appt isn’t until July 17th. Anyway, the numbers that caught the doctors eye was my hemoglobin at 16.8 and hematocrit at 49.8. I got more blood work a month later to see if I could get it lowered and I did, to a 15.8 and 45.8. I did this by more water intake (as I am always dehydrated), aspirin and exercise. I am very nervous about my Oncologist appointment coming up but it is a ways away and I still am battling fatigue and shortness of breath every day. Should I push for more blood work and for some sort of immediate relief? Or just ride it out and see what they say in July. I am very nervous about the diagnosis and my doctor hasn’t said much else so I am left to google and to stress myself out. After the diagnosis now I really just want to know more and what I need to do to feel better.
@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️
I agree with these comments. Your #’s are not that much out of whack especially considering how much they came down after increasing your water consumption.
I’m betting a lot of the reason for your #’s and symptoms is related to dehydration. Stay on top of that day and night- even if it causes you to need to pee a lot more. Do that all the way till your July visit. And let us know how that goes. Best of luck.
New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?
New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?
Welcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.
You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.
Ha! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.
Ha! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.
You may find with treatment you’ll have fewer symptoms. Having too many red blood cells (high hematocrit, high hemoglobin) can elicit some of those symptoms you’re talking about.
Since PV develops slowly you may have had this for several years.
Did you already have the blood work and now you’re just waiting to see about any mutations?
What were your hematocrit and hemoglobin numbers?
Welcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.
You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.
Hi Lori, thanks for all your amazing support and information. My family is finding the articles very helpful as well.
I am not Jak2 positive but the oncologist said I have PV and won't likely need a bone marrow biopsy for a couple/few years. I'll get the ultrasound of my spleen for a baseline, I'm not a large person and he said there would be a bulge if it were enlarged with my size and I have no pain there. I'll get a brain & lung scan at some point for a baseline with the fact I've had bad headaches my entire life, often due to allergies/sinus. The more recent past few years have been different, not the same location and stabbing intense pain so just to be sure nothing else is going on or to see if I've ever had a bleed. I've been in major car accident with internal bleeding (my spleen but it stopped after a few days, more like a leak) and have had falls of 25+ ft with broken bones etc. I was rather active and a bit daredevil as a kid, my back is paying for it with a complete degenerated disc but keep it in check with keeping in shape. That has been harder lately with the SIBO last year and then the PV creeping up on me.
Sorry for novel, wanted to give some background.
If I'm not Jak2 positive could that mean it may not be PV but could be something else?
My lungs are sensitive and I get pneumonia easily but always when I run myself into the ground and didn't rest when quite sick.
Is there a good article that explains if you're Jak2 negative, I can still have PV with my hemoglobin & hemocrit levels?
Thank you for your help & support!
Hi Lori, thanks for all your amazing support and information. My family is finding the articles very helpful as well.
I am not Jak2 positive but the oncologist said I have PV and won't likely need a bone marrow biopsy for a couple/few years. I'll get the ultrasound of my spleen for a baseline, I'm not a large person and he said there would be a bulge if it were enlarged with my size and I have no pain there. I'll get a brain & lung scan at some point for a baseline with the fact I've had bad headaches my entire life, often due to allergies/sinus. The more recent past few years have been different, not the same location and stabbing intense pain so just to be sure nothing else is going on or to see if I've ever had a bleed. I've been in major car accident with internal bleeding (my spleen but it stopped after a few days, more like a leak) and have had falls of 25+ ft with broken bones etc. I was rather active and a bit daredevil as a kid, my back is paying for it with a complete degenerated disc but keep it in check with keeping in shape. That has been harder lately with the SIBO last year and then the PV creeping up on me.
Sorry for novel, wanted to give some background.
If I'm not Jak2 positive could that mean it may not be PV but could be something else?
My lungs are sensitive and I get pneumonia easily but always when I run myself into the ground and didn't rest when quite sick.
Is there a good article that explains if you're Jak2 negative, I can still have PV with my hemoglobin & hemocrit levels?
Thank you for your help & support!
Hi Wendy, it’s my pleasure to help any way I can. Going through my leukemia and bone marrow transplant journey, I didn’t know a thing about that cancer or the transplant, nor anyone who had gone through either of those.
Fortunately I had amazing medical teams for both and learned a great deal, especially from my transplant team at Mayo-Rochester. But no matter how much they told me that I would feel better in a few months it was hard to fathom a positive future. Until about 2 months after my transplant, I was in the lab waiting to be called for blood work. I met 2 people in waiting room…a woman 2 years post and a gentleman right next to her who was 5 years post transplant. We talked at length and I was so inspired and encouraged to see what would be possible for me! I learned the value of a mentor…they gave me hope. ☺️ That’s why I’m here.
You obviously have that all important spirit of endurance. That keeps you moving forward and adapting to your newly diagnosed condition. I think you’re finding out that you need to listen to your body. If you’re tired, you need rest. I know how hard that is when you’re a ‘mover and a shaker’!! I’m the same way. Resting? What’s that? 😅
Thank you for sharing your story! Wow, you were quite the little daredevil. Makes for awesome stories and memories but hard on the body. It’s really inspiring to hear that you keep right on pushing yourself in spite of all the discomfort. I also hope your gut issues get back under control. Do you know what prompted the first case of SIBO? Were you on antibiotics?
Back to the PV…sorry this is getting longer than I intended.
From my limited understanding, there are several subtypes of PV. If you’re not JAK2 positive there you can still have high hemoglobin and hematocrit levels with primary PV. It isn’t always the JAK2 mutation.
There is also secondary PV which is caused by an underlying condition where, basically, the body is being deprived of oxygen for some reason, such as sleep apnea for example. That can cause the kidneys to call for more red blood cell production to increase the oxygen level. It’s driven by a hormone in the blood called erythropoietin (EPO). One way to discern the difference, in secondary polycythemia, your EPO level will be high and you’ll have a high red blood cell count. In primary polycythemia, your red blood cell count will be high, but you’ll have a low level of erythropoietin (EPO)
A little heavy reading: https://www.hematologyandoncology.net/archives/january-2019/diagnosing-or-ruling-out-polycythemia-vera-in-patients-with-erythrocytosis/
You may have seen this article before: https://www.healthline.com/health/secondary-polycythemia#causes
Do you remember seeing an EPO reading in your blood work?
Ha! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.
Yes, that’s exactly what I did. For two years, I had uncontrollable itching and no other symptoms, even my blood was at a good level but after going to dermatologist and doing research I found polycythemia vera. I wrote it on a piece of paper and took it in to my doctor and she said yes, I do think you have it because at that point my blood counts were up she did the Jack 2 test and sent me to an oncologist hematologist. so glad I continue to research
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Thank you for moving the post! And yes, I try to over do it a lot of times and I can’t keep up with my fiancé or friends when we are active. I have found that walking works for me. I will use my inhaler and wait it out if I can’t catch my breath, but a brisk walk has helped a lot.
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2 ReactionsVery boarder line.👍
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1 ReactionI agree with these comments. Your #’s are not that much out of whack especially considering how much they came down after increasing your water consumption.
I’m betting a lot of the reason for your #’s and symptoms is related to dehydration. Stay on top of that day and night- even if it causes you to need to pee a lot more. Do that all the way till your July visit. And let us know how that goes. Best of luck.
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4 ReactionsNew here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?
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Like -
Helpful -
Hug
2 ReactionsWelcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.
You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.
Primary PV is caused by an acquired mutation which can happen randomly. It’s most frequently the mutation of the JAK2 gene. When that happens the defect can cause uncontrolled cell production as in PV where the red blood cells in overdrive.
https://www.healthline.com/health/polycythemia-vera
~~
Secondary Polycythemia doesn’t involve a mutation but the cause can be from an underlying condition such as kidney, lung or coronary problems, sleep apnea, some medications.
https://www.healthline.com/health/secondary-polycythemia
There is an active support group for members with PV. I’ve posted the link below where you can meet members @pmm, @robinll @nypara66 @learnandlive @itsmepeggysue @new2this @seamus1010 @csgreetings and many more.
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Were you having symptoms which led to your diagnosis or was this a random find during a blood test?
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3 ReactionsHa! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.
-
Like -
Helpful -
Hug
3 ReactionsYou may find with treatment you’ll have fewer symptoms. Having too many red blood cells (high hematocrit, high hemoglobin) can elicit some of those symptoms you’re talking about.
Since PV develops slowly you may have had this for several years.
Did you already have the blood work and now you’re just waiting to see about any mutations?
What were your hematocrit and hemoglobin numbers?
Hi Lori, thanks for all your amazing support and information. My family is finding the articles very helpful as well.
I am not Jak2 positive but the oncologist said I have PV and won't likely need a bone marrow biopsy for a couple/few years. I'll get the ultrasound of my spleen for a baseline, I'm not a large person and he said there would be a bulge if it were enlarged with my size and I have no pain there. I'll get a brain & lung scan at some point for a baseline with the fact I've had bad headaches my entire life, often due to allergies/sinus. The more recent past few years have been different, not the same location and stabbing intense pain so just to be sure nothing else is going on or to see if I've ever had a bleed. I've been in major car accident with internal bleeding (my spleen but it stopped after a few days, more like a leak) and have had falls of 25+ ft with broken bones etc. I was rather active and a bit daredevil as a kid, my back is paying for it with a complete degenerated disc but keep it in check with keeping in shape. That has been harder lately with the SIBO last year and then the PV creeping up on me.
Sorry for novel, wanted to give some background.
If I'm not Jak2 positive could that mean it may not be PV but could be something else?
My lungs are sensitive and I get pneumonia easily but always when I run myself into the ground and didn't rest when quite sick.
Is there a good article that explains if you're Jak2 negative, I can still have PV with my hemoglobin & hemocrit levels?
Thank you for your help & support!
-
Like -
Helpful -
Hug
1 ReactionHi Wendy, it’s my pleasure to help any way I can. Going through my leukemia and bone marrow transplant journey, I didn’t know a thing about that cancer or the transplant, nor anyone who had gone through either of those.
Fortunately I had amazing medical teams for both and learned a great deal, especially from my transplant team at Mayo-Rochester. But no matter how much they told me that I would feel better in a few months it was hard to fathom a positive future. Until about 2 months after my transplant, I was in the lab waiting to be called for blood work. I met 2 people in waiting room…a woman 2 years post and a gentleman right next to her who was 5 years post transplant. We talked at length and I was so inspired and encouraged to see what would be possible for me! I learned the value of a mentor…they gave me hope. ☺️ That’s why I’m here.
You obviously have that all important spirit of endurance. That keeps you moving forward and adapting to your newly diagnosed condition. I think you’re finding out that you need to listen to your body. If you’re tired, you need rest. I know how hard that is when you’re a ‘mover and a shaker’!! I’m the same way. Resting? What’s that? 😅
Thank you for sharing your story! Wow, you were quite the little daredevil. Makes for awesome stories and memories but hard on the body. It’s really inspiring to hear that you keep right on pushing yourself in spite of all the discomfort. I also hope your gut issues get back under control. Do you know what prompted the first case of SIBO? Were you on antibiotics?
Back to the PV…sorry this is getting longer than I intended.
From my limited understanding, there are several subtypes of PV. If you’re not JAK2 positive there you can still have high hemoglobin and hematocrit levels with primary PV. It isn’t always the JAK2 mutation.
There is also secondary PV which is caused by an underlying condition where, basically, the body is being deprived of oxygen for some reason, such as sleep apnea for example. That can cause the kidneys to call for more red blood cell production to increase the oxygen level. It’s driven by a hormone in the blood called erythropoietin (EPO). One way to discern the difference, in secondary polycythemia, your EPO level will be high and you’ll have a high red blood cell count. In primary polycythemia, your red blood cell count will be high, but you’ll have a low level of erythropoietin (EPO)
A little heavy reading:
https://www.hematologyandoncology.net/archives/january-2019/diagnosing-or-ruling-out-polycythemia-vera-in-patients-with-erythrocytosis/
You may have seen this article before:
https://www.healthline.com/health/secondary-polycythemia#causes
Do you remember seeing an EPO reading in your blood work?
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2 ReactionsYes, that’s exactly what I did. For two years, I had uncontrollable itching and no other symptoms, even my blood was at a good level but after going to dermatologist and doing research I found polycythemia vera. I wrote it on a piece of paper and took it in to my doctor and she said yes, I do think you have it because at that point my blood counts were up she did the Jack 2 test and sent me to an oncologist hematologist. so glad I continue to research
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Like -
Helpful -
Hug
1 Reaction