Hello , I have been treated for PV/ JAK2 for four years . I was on Hydroxea and just qualified for Jakafi. I am interested in what others take for this disease and what effect it has. Thanks
Hello , I have been treated for PV/ JAK2 for four years . I was on Hydroxea and just qualified for Jakafi. I am interested in what others take for this disease and what effect it has. Thanks
Hello
I was diagnosed 5 years ago.
I am a 59 y/o female.
My platelets are now over 700
My ferritin is 5.
My Doc does not seem concerned.
I deal w a great deal of itching and fatigue...
Are these numbers safe?
Hello
I was diagnosed 5 years ago.
I am a 59 y/o female.
My platelets are now over 700
My ferritin is 5.
My Doc does not seem concerned.
I deal w a great deal of itching and fatigue...
Are these numbers safe?
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 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.
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Jakafi helped immensely with my PV side effects.
Hello , I have been treated for PV/ JAK2 for four years . I was on Hydroxea and just qualified for Jakafi. I am interested in what others take for this disease and what effect it has. Thanks
I took 2 zyrtec every day for at least 5 years. Now I take it as needed. It worked on itching for me.
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5 ReactionsWelcome Christine, I moved your "just diagnosed" message to this existing discussion of the same name:
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read previous posts and connect easily with members like @pv17082022 @buckaroobanzai @jerrlin @lindaw123 @jwn8700 @fishergramma @hope19 @stljack @mattymatilda and many more. They may also be able to give feedback on your numbers, itching and fatigue tips.
You may also be interested in these related discussions:
- Polycythemia: Primary or Secondary? https://connect.mayoclinic.org/discussion/polycythemia-primary-or-secondary/
- PV Itching Not After Bathing https://connect.mayoclinic.org/discussion/pv-itching-not-after-bathing/
- Polycythemia Vera: Is there anything I can do for fatigue at home? https://connect.mayoclinic.org/discussion/fatigue-2/
What helps relieve the itching?
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2 ReactionsHello
I was diagnosed 5 years ago.
I am a 59 y/o female.
My platelets are now over 700
My ferritin is 5.
My Doc does not seem concerned.
I deal w a great deal of itching and fatigue...
Are these numbers safe?
Vitamin D deficiency is consistently noted in many conditions, autoimmune or otherwise.
-
Like -
Helpful -
Hug
1 ReactionI 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.
-
Like -
Helpful -
Hug
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.