1. < Blood Cancers & Disorders

Polycythemia: Does anyone have a problem with dryness?

Posted by rmegg @rmegg, Dec 21, 2023

Does anyone have a problem with dryness? My eyes, ears, scalp and very poor blood flow because of thick blood ?

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 24, 2023
In reply to @mcvorbs "I am 73 year old, widow. No family near my location. Two years ago I had..." + (show)
@mcvorbs

I am 73 year old, widow. No family near my location.
Two years ago I had Covid. Eighteen months later I had a CBC and was immediately sent to hematologist without any explanation except that the Hematologist would take care of me. Hematologist has been pleasant but non-informative. After four phlebotomies 4-6 weeks apart, and my red, white, hemoglobin, hematocrits were within an acceptable range…..my platelets had doubled to 800+ I have been self managing the blood issues with diet, moderate exercise, and resr. I have requested a second CBC with no response. My dr. Said, “why would you want to do that?” I wanted to confirm the diagnosis of JAK2 mutation. I did have bone marrow biopsy which removed “quite a large amount” of marrow. Today I find I am over producing histamines which increase platelets! So, anyone have same issue? Now doing More research and diet modifications to control platelet increasing and histamine increasing foods.
Otherwise, I feel well and continue volunteer work and attending church, socializing. I do endure frequent fatigue and am constantly hungry!
God bless you all. Merry Christmas!
M

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Welcome to Connect, @mcvorbs. Blood conditions such as Polycythemia Vera can develop so slowly, with few symptoms, that they are often discovered randomly with routine blood work. Your primary care doctor was wise in referring you to a hematologist. However both of these doctors sound a little less than helpful. Isn’t that just so frustrating? You’d like answers!

You mentioned having the CBC and also a bone marrow biopsy. At some point were you told that there was a mutation with the JAK2 gene? If that’s the case, you wouldn’t really need another CBC to confirm it. The JAK2 gene mutation is generally the primary factor of blood of PV.

I’m sure you’ve done a fair amount of reading to familiarize yourself with PV, causes and treatments but I thought I’d toss out a few more articles for you that I find helpful and informational.
https://www.healthline.com/health/polycythemia-vera
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https://www.verywellhealth.com/jak2-mutation-5217909?utm_campaign=686803700-1172080423051232&utm_source=bingpaid&utm_medium=paid&utm_content=73255250357402&utm_term=o-polycythemia%20vera-Polycythemia%20vera&msclkid=c200be2a49eb1e036483dba2033067b0
~~~
https://www.verywellhealth.com/polycythemia-vera-disorder-overview-2252550
Has your doctor suggested any treatment to keep your platelet level in a more normal range?

REPLY
nypara66 | @nypara66 | Dec 25, 2023
In reply to @jerrlin "I am 75 years old and was diagnosed three years ago with PCV and Jak 2..." + (show)
@jerrlin

I am 75 years old and was diagnosed three years ago with PCV and Jak 2 positive. Itching is sometimes unbearable. I take antihistamines morning and night which helps tremendously. I was put on Hydroxyurea for 2 weeks and after the first week started feeling great, no more fatigue or headaches. Itching was less severe but my platelets dropped from 337 to 57. Now off Hydroxyurea until blood draws in 2 weeks and adjust from there. I think one has to be patient and informed. It’s a balancing act that will have to be adjusted the rest of my life. Ask questions.

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Was 337 your high platelet count? That’s actually normal and an excellent number! My oncologist says 600 and under is acceptable even though the labs list it as 150-450. 57 is extremely low and I’m certain that’s why you were take off the meds.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 25, 2023
In reply to @thicksotropic "Well done to all of you" + (show)
@thicksotropic

Well done to all of you

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Welcome to Connect, @thicksotropic. Blood conditons can surely create some challenges in our everyday lives. Do you also have Polycythemia vera? What side effects have you experienced?

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