Yes, for approx 10 to 12 years I've ranged from osteopena to severe to extreme, currently at osteopena level. I've taken medications and for about 3 years Prolia which I asked to get off and started on pill form as the side affects were debilitating. I asked my hemotologist if my blood issue could be medication related because I don't recall having elevations prior to taking osteo meds but she advised no.
I also have elevated chlorestrol and hypothyroid. I take only osteo and thyroid meds. I'm working with my other main physician a DO taking a regiment of supplements and exercise and 64 oz of water. I have had changes where I have gotten infections when I hardly ever did before. More susceptible to thing.
This site is a wealth of information I haven't found other places. Thank you.
So glad to read your story. My story will officially start next month. Thankfully it's only taken me about 6 weeks to get in to see a hematologist. I'm a bit nervous - and my spouse is less than supportive. I think that's the hardest thing for me is the feeling I'm fighting this alone. I think this for sure will show a person's strength or not. I've decided to be strong and meet this thing head on. Thanks for your inspiring note. I think my strength comes from this group. Thank you folks! Carol
It’s unbelievably frustrating when our life takes such an abrupt turn for no reason…not that having a reason makes it any easier to cope. But at least there’s a physical cause behind your shift in energy and changes that you’re experiencing.
Treatments can range from simple low dose aspirin and the occasional phlebotomy (a more refined and less traumatic blood letting than the dark ages 🙃) to medications such as hydroxyurea, Jakafi and others meant to slow the progression and proliferation of too many red blood cells being produced.
One of my go-to informational articles that’s helpful for newbies with PV is this one from Healthline.com. https://www.healthline.com/health/polycythemia-vera
Do you also have osteoporosis?
Yes, for approx 10 to 12 years I've ranged from osteopena to severe to extreme, currently at osteopena level. I've taken medications and for about 3 years Prolia which I asked to get off and started on pill form as the side affects were debilitating. I asked my hemotologist if my blood issue could be medication related because I don't recall having elevations prior to taking osteo meds but she advised no.
I also have elevated chlorestrol and hypothyroid. I take only osteo and thyroid meds. I'm working with my other main physician a DO taking a regiment of supplements and exercise and 64 oz of water. I have had changes where I have gotten infections when I hardly ever did before. More susceptible to thing.
This site is a wealth of information I haven't found other places. Thank you.
My symptoms have been a slow roll over the past say 5 years. Im at 65 next month and I have changed many of my life activities. I began noticing I stopped enjoying the things I normally enjoyed either because mostly found it too tiring and not worth the effort or I would just wake up tired and irritable. I could not figure it out until this knowledge arrived. It all makes sense to me now. I have symptoms of exhaustion, weakness, foggy mentally, sleep problems, aches, and just recently sharp pains in different parts of my body and at varying depth. I can have a day feeling just a little off or have a day where I drag myself out of bed. I was the energizer bunny never able to sit still all my life but every day I force myself to get up and move. Having been highly athletic in my early years I've got a spine no one would dare claim if they saw the xrays and I along with doctors attributed many symptoms to aging and my spine issues.
As for the medications mentioned by the doctor, she only mentioned blood draws and or possible medications when the 6 months is up. She didn't mention any names. However, there was a recent advertisement for a Polycythemia study. I did inquire about it however it was all the way into Houston and I would not dare make that travel. I wish they would have offered it at one of their hubs like in The Woodlands but it was only offered at the Cancer Center in Houston. They were doing a study on a medication. It would have been nice to participate.
It’s unbelievably frustrating when our life takes such an abrupt turn for no reason…not that having a reason makes it any easier to cope. But at least there’s a physical cause behind your shift in energy and changes that you’re experiencing.
Treatments can range from simple low dose aspirin and the occasional phlebotomy (a more refined and less traumatic blood letting than the dark ages 🙃) to medications such as hydroxyurea, Jakafi and others meant to slow the progression and proliferation of too many red blood cells being produced.
One of my go-to informational articles that’s helpful for newbies with PV is this one from Healthline.com. https://www.healthline.com/health/polycythemia-vera
Do you also have osteoporosis?
My symptoms have been a slow roll over the past say 5 years. Im at 65 next month and I have changed many of my life activities. I began noticing I stopped enjoying the things I normally enjoyed either because mostly found it too tiring and not worth the effort or I would just wake up tired and irritable. I could not figure it out until this knowledge arrived. It all makes sense to me now. I have symptoms of exhaustion, weakness, foggy mentally, sleep problems, aches, and just recently sharp pains in different parts of my body and at varying depth. I can have a day feeling just a little off or have a day where I drag myself out of bed. I was the energizer bunny never able to sit still all my life but every day I force myself to get up and move. Having been highly athletic in my early years I've got a spine no one would dare claim if they saw the xrays and I along with doctors attributed many symptoms to aging and my spine issues.
As for the medications mentioned by the doctor, she only mentioned blood draws and or possible medications when the 6 months is up. She didn't mention any names. However, there was a recent advertisement for a Polycythemia study. I did inquire about it however it was all the way into Houston and I would not dare make that travel. I wish they would have offered it at one of their hubs like in The Woodlands but it was only offered at the Cancer Center in Houston. They were doing a study on a medication. It would have been nice to participate.
First time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...
Welcome to Connect, @chella65. As you can see you’re not alone with your new diagnosis of PV. You’ve landed in the right support group. There are a number of other members who also have Polycythemia vera, many with the mutated JAK2 gene. Sometimes it can be a little challenging to get a definitive diagnosis but it sounds as though you have a good hematologist oncologist on your team now and doing regular followup appts.
There can be a number of symptoms with PV and because is generally slow to develop it can be difficult to put your finger on any one symptom. Often the first sign is itching after a bath or shower, some patients feel tired, breathless, achy, etc.
Looking through the conversations in the forum, if there are particular replies with whom you’d like to respond, just click the blue Reply button and a box will open where you can type your message. That person will be notified that there’s been a reply. Also, if you’d like to tag someone so they get a notification, simply type in the person’s @name so they get the message.
Do you have any specific symptoms you’d like to share with us? Has your doctor mentioned the need for a phlebotomy to reduced the amount of red blood in your body which will lower your numbers?
First time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...
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?
I, too, have a JAK2 mutation with a low hemoglobin, slight increase in WBCs and elevated platelets. After a year of battling an iron deficiency anemia, I have gotten into the low normal range. My last follow up for anemia revealed my JAK2 mutation and now I’m labeled as having PV and am on hydroxyurea. I haven’t found anything in the literature about anemia with PV. Guess I’m in denial.
Ironically I started my career in Hematology before I specialized in genetics. So, I understand the values and symptoms.
I am in the process of being diagnosed with an MPN. The doctor hasn't said for sure what type, but from my research it can only be PV. My medical background is sort of fitting the picture. 4 PEs 8 years ago. Totally unprovoked. Gout out of nowhere. Now my toe that had gout aches on a regular basis. I have extreme fatigue. Headaches ( I do have a headache syndrome but it has been under control for years). Pins and needles in my hands and feet. Did I mention extreme fatigue cuz that is a biggie for me. And the thing that started the process is dizziness and weakness.
Over a year ago I ended up in the ED for the dizziness. They told me I was dehydrated, my h/h was up. I pointed out that my urine showed I was not dehydrated at all. So they told me I was overhydrated and sent me home. My PCP told me the exact same thing. Desipite it never getting better.
Late last year I was finally sent to a heme/onc and he diagnosed Iron deficincy without anemia. I was to get an iron infusion. Before I could I had a minor procedure that caused more bleeding then they anticipated. So, my blood work looked great. All normal. Then after the iron it went back up. He didn't care then, but this last time he said he was concerned since my h/h has not come down.
I am JAK-2 negative, but he said there wasn't enough testing done. My next lab work isn't until August and I'm a wreck. Part of me is sure I don't have this, I don't have high platelets or WBCs. Actually, my platelets are low normal. They hover on the cutoff all the time.
I am on xeralto from the blood clots and will be for life. I wonder if that has been a good thing and kept me from being sicker since my blood is thinned out. I can't take aspirin because I also had a bleeding ulcer that almost killed me about 3 years ago.
Sorry this was so long. I am not sure what I'm looking for here. Maybe reassurance one way or the other. It has been good reading what everyone else has to say.
I think we know our bodies better than the docs do sometimes. I've been struggling to get a consistent diagnosis as well. I have all the symptoms of PV but my current doc disagrees. My former doc said I have secondary PV but he's moved away so I don't see him anymore.
Hang in there and don't give up.
I am in the process of being diagnosed with an MPN. The doctor hasn't said for sure what type, but from my research it can only be PV. My medical background is sort of fitting the picture. 4 PEs 8 years ago. Totally unprovoked. Gout out of nowhere. Now my toe that had gout aches on a regular basis. I have extreme fatigue. Headaches ( I do have a headache syndrome but it has been under control for years). Pins and needles in my hands and feet. Did I mention extreme fatigue cuz that is a biggie for me. And the thing that started the process is dizziness and weakness.
Over a year ago I ended up in the ED for the dizziness. They told me I was dehydrated, my h/h was up. I pointed out that my urine showed I was not dehydrated at all. So they told me I was overhydrated and sent me home. My PCP told me the exact same thing. Desipite it never getting better.
Late last year I was finally sent to a heme/onc and he diagnosed Iron deficincy without anemia. I was to get an iron infusion. Before I could I had a minor procedure that caused more bleeding then they anticipated. So, my blood work looked great. All normal. Then after the iron it went back up. He didn't care then, but this last time he said he was concerned since my h/h has not come down.
I am JAK-2 negative, but he said there wasn't enough testing done. My next lab work isn't until August and I'm a wreck. Part of me is sure I don't have this, I don't have high platelets or WBCs. Actually, my platelets are low normal. They hover on the cutoff all the time.
I am on xeralto from the blood clots and will be for life. I wonder if that has been a good thing and kept me from being sicker since my blood is thinned out. I can't take aspirin because I also had a bleeding ulcer that almost killed me about 3 years ago.
Sorry this was so long. I am not sure what I'm looking for here. Maybe reassurance one way or the other. It has been good reading what everyone else has to say.
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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So glad to read your story. My story will officially start next month. Thankfully it's only taken me about 6 weeks to get in to see a hematologist. I'm a bit nervous - and my spouse is less than supportive. I think that's the hardest thing for me is the feeling I'm fighting this alone. I think this for sure will show a person's strength or not. I've decided to be strong and meet this thing head on. Thanks for your inspiring note. I think my strength comes from this group. Thank you folks! Carol
-
Like -
Helpful -
Hug
4 ReactionsYes, for approx 10 to 12 years I've ranged from osteopena to severe to extreme, currently at osteopena level. I've taken medications and for about 3 years Prolia which I asked to get off and started on pill form as the side affects were debilitating. I asked my hemotologist if my blood issue could be medication related because I don't recall having elevations prior to taking osteo meds but she advised no.
I also have elevated chlorestrol and hypothyroid. I take only osteo and thyroid meds. I'm working with my other main physician a DO taking a regiment of supplements and exercise and 64 oz of water. I have had changes where I have gotten infections when I hardly ever did before. More susceptible to thing.
This site is a wealth of information I haven't found other places. Thank you.
-
Like -
Helpful -
Hug
2 ReactionsIt’s unbelievably frustrating when our life takes such an abrupt turn for no reason…not that having a reason makes it any easier to cope. But at least there’s a physical cause behind your shift in energy and changes that you’re experiencing.
Treatments can range from simple low dose aspirin and the occasional phlebotomy (a more refined and less traumatic blood letting than the dark ages 🙃) to medications such as hydroxyurea, Jakafi and others meant to slow the progression and proliferation of too many red blood cells being produced.
One of my go-to informational articles that’s helpful for newbies with PV is this one from Healthline.com.
https://www.healthline.com/health/polycythemia-vera
Do you also have osteoporosis?
-
Like -
Helpful -
Hug
3 ReactionsMy symptoms have been a slow roll over the past say 5 years. Im at 65 next month and I have changed many of my life activities. I began noticing I stopped enjoying the things I normally enjoyed either because mostly found it too tiring and not worth the effort or I would just wake up tired and irritable. I could not figure it out until this knowledge arrived. It all makes sense to me now. I have symptoms of exhaustion, weakness, foggy mentally, sleep problems, aches, and just recently sharp pains in different parts of my body and at varying depth. I can have a day feeling just a little off or have a day where I drag myself out of bed. I was the energizer bunny never able to sit still all my life but every day I force myself to get up and move. Having been highly athletic in my early years I've got a spine no one would dare claim if they saw the xrays and I along with doctors attributed many symptoms to aging and my spine issues.
As for the medications mentioned by the doctor, she only mentioned blood draws and or possible medications when the 6 months is up. She didn't mention any names. However, there was a recent advertisement for a Polycythemia study. I did inquire about it however it was all the way into Houston and I would not dare make that travel. I wish they would have offered it at one of their hubs like in The Woodlands but it was only offered at the Cancer Center in Houston. They were doing a study on a medication. It would have been nice to participate.
-
Like -
Helpful -
Hug
1 ReactionWelcome to Connect, @chella65. As you can see you’re not alone with your new diagnosis of PV. You’ve landed in the right support group. There are a number of other members who also have Polycythemia vera, many with the mutated JAK2 gene. Sometimes it can be a little challenging to get a definitive diagnosis but it sounds as though you have a good hematologist oncologist on your team now and doing regular followup appts.
There can be a number of symptoms with PV and because is generally slow to develop it can be difficult to put your finger on any one symptom. Often the first sign is itching after a bath or shower, some patients feel tired, breathless, achy, etc.
Looking through the conversations in the forum, if there are particular replies with whom you’d like to respond, just click the blue Reply button and a box will open where you can type your message. That person will be notified that there’s been a reply. Also, if you’d like to tag someone so they get a notification, simply type in the person’s @name so they get the message.
Do you have any specific symptoms you’d like to share with us? Has your doctor mentioned the need for a phlebotomy to reduced the amount of red blood in your body which will lower your numbers?
-
Like -
Helpful -
Hug
1 ReactionFirst time joining a group here used mayo for research but now ...Im recently placed in a 6 month observation for Polycythemia Vera. We have excluded other factors, I came back negative for the Gene however my hematologist says 20% of results for negative can be false. I've had elevated RBC and hematocrit for several years now. I noticed I didn't feel well most days when I turned 60 and have been talking with doctors ever since about not feeling myself. Recently I was referred to a hematologist/oncologist and she did her process of illumination tests. I have many of the symptoms, and they come and go in the range of severity. I'm taking a slew of supplements to help and some have been good. I am in my 3rd month of the 6 month observation period, just went to the lab, and again both are elevated. I will go back in 3 more months and if still elevated she advised she will confirm the diagnosis and decide the course of treatment. I wonder if the other changes in health Im experiencing is attributed to this...
-
Like -
Helpful -
Hug
1 ReactionI, too, have a JAK2 mutation with a low hemoglobin, slight increase in WBCs and elevated platelets. After a year of battling an iron deficiency anemia, I have gotten into the low normal range. My last follow up for anemia revealed my JAK2 mutation and now I’m labeled as having PV and am on hydroxyurea. I haven’t found anything in the literature about anemia with PV. Guess I’m in denial.
Ironically I started my career in Hematology before I specialized in genetics. So, I understand the values and symptoms.
-
Like -
Helpful -
Hug
2 ReactionsI think we know our bodies better than the docs do sometimes. I've been struggling to get a consistent diagnosis as well. I have all the symptoms of PV but my current doc disagrees. My former doc said I have secondary PV but he's moved away so I don't see him anymore.
Hang in there and don't give up.
-
Like -
Helpful -
Hug
3 ReactionsHi all.
I am in the process of being diagnosed with an MPN. The doctor hasn't said for sure what type, but from my research it can only be PV. My medical background is sort of fitting the picture. 4 PEs 8 years ago. Totally unprovoked. Gout out of nowhere. Now my toe that had gout aches on a regular basis. I have extreme fatigue. Headaches ( I do have a headache syndrome but it has been under control for years). Pins and needles in my hands and feet. Did I mention extreme fatigue cuz that is a biggie for me. And the thing that started the process is dizziness and weakness.
Over a year ago I ended up in the ED for the dizziness. They told me I was dehydrated, my h/h was up. I pointed out that my urine showed I was not dehydrated at all. So they told me I was overhydrated and sent me home. My PCP told me the exact same thing. Desipite it never getting better.
Late last year I was finally sent to a heme/onc and he diagnosed Iron deficincy without anemia. I was to get an iron infusion. Before I could I had a minor procedure that caused more bleeding then they anticipated. So, my blood work looked great. All normal. Then after the iron it went back up. He didn't care then, but this last time he said he was concerned since my h/h has not come down.
I am JAK-2 negative, but he said there wasn't enough testing done. My next lab work isn't until August and I'm a wreck. Part of me is sure I don't have this, I don't have high platelets or WBCs. Actually, my platelets are low normal. They hover on the cutoff all the time.
I am on xeralto from the blood clots and will be for life. I wonder if that has been a good thing and kept me from being sicker since my blood is thinned out. I can't take aspirin because I also had a bleeding ulcer that almost killed me about 3 years ago.
Sorry this was so long. I am not sure what I'm looking for here. Maybe reassurance one way or the other. It has been good reading what everyone else has to say.
-
Like -
Helpful -
Hug
4 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
-
Like -
Helpful -
Hug
1 Reaction