← Return to Polycythemia: Does anyone have a problem with dryness?

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@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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Replies to "I am 73 year old, widow. No family near my location. Two years ago I had..."

I have polycythemia as well. I discovered that my terrible itch and hives lasting about 30-minutes due to showers or any water on my skin stopped with long baths of 25-30 minutes. It works!
Rob

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
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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?