I have diagnosed as PV just a few days ago. When I was searching for the details of PV , I found this site. I am 37 and diagnosed as PV. When I was searching the net I found a relationship with Vitamin-D and PV ? What do you think ?
I was diagnosed with PCV in May 2022 , but started the itching symptoms in 2019 with perfect blood counts. I am 2 baby aspirin a day and have had 2 phlebotomy’s. Right now my hematocrit is at 44.1 and my hemoglobin is 14.3. I wondered if anyone has found relief from the itching and also hair loss. ? I am 73 years old and otherwise in excellent health.
I find your post interesting because back in 2019 when I first discovered something was wrong with my blood, I was sent to an Oncologist/Hematologist. Turns out I have a blood condition known as MGUS. In my case, it was triggered by precancerous cells discovered in my blood. One of the first things she noticed was, I was anemic, my hemoglobin was below normal, my platelets were down while size and count were messed up. She gave me a number of tests to see why I was anemic but never found the reason.
Fast forward to September 2021 to December 2021. I’m still anemic almost 3 years in September, then between September & December everything is in the middle of the normal range. I think what the he!! triggered such a drastic change. That’s when I noticed my
M-Spike has spiked 100%(an indication my precancerous cells are progressing to cancer). Humm, along with my red cells increasing so much, along with all the other parts of my blood, I couldn’t figure out why, until I read about PV. Since then, my blood numbers are all over the place, including my B-Cells, lymphocytes and neutrophils, indicating my body must be fighting a serious illness like cancer.
I no longer believe I have PV but I do have a number of the same symptoms that you have. Your Pcp could prescribe a medication like Antihistamines to ease the itching. As for your hair loss, ask your Pcp if your body is producing DHT, it’s a substitute for natural Testosterone women normally make for child development in pregnancy. When women lose the ability to produce natural Testosterone, the body makes DHT which kills the roots of your hair causing it to die and fall out. So disgust this with your Dr.
I was diagnosed with PCV in May 2022 , but started the itching symptoms in 2019 with perfect blood counts. I am 2 baby aspirin a day and have had 2 phlebotomy’s. Right now my hematocrit is at 44.1 and my hemoglobin is 14.3. I wondered if anyone has found relief from the itching and also hair loss. ? I am 73 years old and otherwise in excellent health.
Good day, mate has just been diagnosed with PV, having Jak2 mutation. Have had phlebotomy - several to get into range. Now will start Hydrea. Interested in side effects and how long they occur. I'm sure there will be many questions to come but key ones I have are (1). if JAK2 inhibitor drug is used to stop production, is there any information that there is a possibility once the inhibitor is stopped, the high production of blood cells may stop as well? The reason I ask, is that I was getting severe migraines. I could not get rid of the pain. My doctor put me on a pain inhibitor as she thought maybe the pain transmitters were not 'shutting off'. After several days 10 - 14, I stopped taking the pain inhibitor drugs and the pain was gone. Thinking could this be the same with the JAK2 inhibitor drugs. (2). Are there any relations between blood disorders, like PV - high platelets, high hemoglobin and high red blood count being related to the Covid19 vaccines - specifically Pfizer? Thank you in advance for your comments.
I'm new to this group.
Dx w PV about a year and 1/2 ago. I am signed up to a portal to review my labs. Be nice to have others that are going thru same situations.
Upon receiving a new diagnosis, it is common to look for a cause. You’re asking about vitamin C and keto diet as possibly contributors. I wonder if you’ll ever know definitively. The most common risk factors for PV are age and gender (female).
What treatment if any have you had since diagnosis? What lifestyle approaches help you live well with PV?
I was diagnosed with Polycythemia Vera three years ago. I was experiencing symptoms akin to high blood pressure. Historically, I have never had any issues with high blood pressure. I was having occular migraines -- seeing "floaters" moving through my field of vision, something I was familiar with because of migraines but I was having them without getting an actual migraine. My blood pressure was elevated and when I checked it, I found it to be considerably higher than normal. I went to the doctor and they ran a complete panel and when the results came back they referred me to oncology which I thought was really strange but later on it all made sense. My blood pressure was elevated due to my body simply producing too many red blood cells and in addition to the excess red blood cells I also had elevated platelets. After running tests found JAK-2 mutations, the diagnosis was polycythemia vera. My oncologist has set a threshold of 45% for my hematocrit, so when routine blood labs show a hematocrit higher than that I have a plebotomy. I was on a six week schedule for those initially, and then it moved to about every four weeks. After I went on a diet that put me into nutritional ketosis, I noticed that the time between phlebotomies increased. I have been able to go 8 and 12 weeks between them while in nutritional ketosis. I can't say whether or not there is a direct correlation, but that is what I've observed myself. Others may experience different results.
I was on keto better than 1 yr. Lost intended weight pcp extremely happy with labs every visit. Then high HCT was found in labs. Referred to Oncologist
and labs prove Jak2 mutation. Went off keto regained my weight.
Trying to decide if Keto may have anything to do with the cause of the mutation.
Hi @hope19, I moved your message to this existing discussion about Polycythemia Vera so that you can connect with fellow members @atir@clarissa37@chadknudson@apr931@mwear and @juiceinjc. I'd also like to tag @1nan on this disucssion as she may have some experience to share about blood work and changing values.
Hope, have you talked to your hematologist about the blood work results. It may not necessarily be a misdiagnosis but rather remission. Are you able to schedule an appointment or virtual consult or even contact through the patient portal if your hematologist has one?
I'm new to this group.
Dx w PV about a year and 1/2 ago. I am signed up to a portal to review my labs. Be nice to have others that are going thru same situations.
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
Excuse this my first responce. I had similar occurrence last year. It seemed like when I ate a lot of Watermelon I didn't require phlebotomy. Never thought it was the Vit C.
My question is. Even though the Vit C is lowering the Hct.
Is the blood thinner?
Appreciate your reply.
Yes, I'm the one who always has her look at the blood results before a phlebotomy, and that's when she says, my levels are good so no need , reschedule for next month. I often wonder if I wasn't pro active with my health if I'd be having these phlebotomies for no reason. Very happy I decided to wait on the Hydroxyurea. I do have a session with her, but not until November. My next scheduled phlebotomy is for end of August with a blood test the week before, which I asked for and I will confer with her once again when the results come in. I get the results as well which is how I know how my levels are in comparison to how they should be. I'm not a doctor but maybe switching from the heparin to the equilis has somehow stabilized things? Or am I grasping at straws. Because I have CVST along with inter cranial pressure, pappilledema it was thought that the PV was the initial cause. I don't know anymore. I ve moved on..
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I have diagnosed as PV just a few days ago. When I was searching for the details of PV , I found this site. I am 37 and diagnosed as PV. When I was searching the net I found a relationship with Vitamin-D and PV ? What do you think ?
I find your post interesting because back in 2019 when I first discovered something was wrong with my blood, I was sent to an Oncologist/Hematologist. Turns out I have a blood condition known as MGUS. In my case, it was triggered by precancerous cells discovered in my blood. One of the first things she noticed was, I was anemic, my hemoglobin was below normal, my platelets were down while size and count were messed up. She gave me a number of tests to see why I was anemic but never found the reason.
Fast forward to September 2021 to December 2021. I’m still anemic almost 3 years in September, then between September & December everything is in the middle of the normal range. I think what the he!! triggered such a drastic change. That’s when I noticed my
M-Spike has spiked 100%(an indication my precancerous cells are progressing to cancer). Humm, along with my red cells increasing so much, along with all the other parts of my blood, I couldn’t figure out why, until I read about PV. Since then, my blood numbers are all over the place, including my B-Cells, lymphocytes and neutrophils, indicating my body must be fighting a serious illness like cancer.
I no longer believe I have PV but I do have a number of the same symptoms that you have. Your Pcp could prescribe a medication like Antihistamines to ease the itching. As for your hair loss, ask your Pcp if your body is producing DHT, it’s a substitute for natural Testosterone women normally make for child development in pregnancy. When women lose the ability to produce natural Testosterone, the body makes DHT which kills the roots of your hair causing it to die and fall out. So disgust this with your Dr.
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1 ReactionI was diagnosed with PCV in May 2022 , but started the itching symptoms in 2019 with perfect blood counts. I am 2 baby aspirin a day and have had 2 phlebotomy’s. Right now my hematocrit is at 44.1 and my hemoglobin is 14.3. I wondered if anyone has found relief from the itching and also hair loss. ? I am 73 years old and otherwise in excellent health.
Good day, mate has just been diagnosed with PV, having Jak2 mutation. Have had phlebotomy - several to get into range. Now will start Hydrea. Interested in side effects and how long they occur. I'm sure there will be many questions to come but key ones I have are (1). if JAK2 inhibitor drug is used to stop production, is there any information that there is a possibility once the inhibitor is stopped, the high production of blood cells may stop as well? The reason I ask, is that I was getting severe migraines. I could not get rid of the pain. My doctor put me on a pain inhibitor as she thought maybe the pain transmitters were not 'shutting off'. After several days 10 - 14, I stopped taking the pain inhibitor drugs and the pain was gone. Thinking could this be the same with the JAK2 inhibitor drugs. (2). Are there any relations between blood disorders, like PV - high platelets, high hemoglobin and high red blood count being related to the Covid19 vaccines - specifically Pfizer? Thank you in advance for your comments.
Welcome Linda. Here you can connect with others living with Polycythemia Vera like @chadknudson @hope19 @atir @clarissa37 @chadknudson @apr931 @mwear and @juiceinjc.
Upon receiving a new diagnosis, it is common to look for a cause. You’re asking about vitamin C and keto diet as possibly contributors. I wonder if you’ll ever know definitively. The most common risk factors for PV are age and gender (female).
What treatment if any have you had since diagnosis? What lifestyle approaches help you live well with PV?
I was on keto better than 1 yr. Lost intended weight pcp extremely happy with labs every visit. Then high HCT was found in labs. Referred to Oncologist
and labs prove Jak2 mutation. Went off keto regained my weight.
Trying to decide if Keto may have anything to do with the cause of the mutation.
I'm new to this group.
Dx w PV about a year and 1/2 ago. I am signed up to a portal to review my labs. Be nice to have others that are going thru same situations.
-
Like -
Helpful -
Hug
1 ReactionExcuse this my first responce. I had similar occurrence last year. It seemed like when I ate a lot of Watermelon I didn't require phlebotomy. Never thought it was the Vit C.
My question is. Even though the Vit C is lowering the Hct.
Is the blood thinner?
Appreciate your reply.
Anyone know of any clinical trials? Gene therapy, transfusion,stem cells.
Yes, I'm the one who always has her look at the blood results before a phlebotomy, and that's when she says, my levels are good so no need , reschedule for next month. I often wonder if I wasn't pro active with my health if I'd be having these phlebotomies for no reason. Very happy I decided to wait on the Hydroxyurea. I do have a session with her, but not until November. My next scheduled phlebotomy is for end of August with a blood test the week before, which I asked for and I will confer with her once again when the results come in. I get the results as well which is how I know how my levels are in comparison to how they should be. I'm not a doctor but maybe switching from the heparin to the equilis has somehow stabilized things? Or am I grasping at straws. Because I have CVST along with inter cranial pressure, pappilledema it was thought that the PV was the initial cause. I don't know anymore. I ve moved on..