I am curious: What symptoms did everyone have in the beginning for PV?

Posted by lilbean81 @lilbean81, Jun 3, 2023

I just wondering what symptoms did everyone have in the beginning for PV?

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My first indication was when my blood numbers were way off. Then I started breaking out in hives after a soaking baths which I loved to do. Then I noticed the fatigue which I blamed on my fibromyalgia. Now I struggle with all over pain, shortness of breath, itchy skin, headaches, high blood pressure and more
I wish you luck and hope you find a supportive physician.


Without knowing I was heading for it my first symptoms were headaches, then pink -red “blotches” on my skin (little red triangles under my eyes, the insides of my hands showed red and holding them upwards stayed that way instead of diminishing to pale pink/white/normal colour, painful calves and tingling feet, and I bruised badly). Once diagnosed and after 3 phlebotomies, the blotchiness disappeared, as did the headaches and the bruising got less. The scrungy sensation in toes remains, the “painful” calves continue depending on the day and my activities.
Jakafi keeps my red globules and platelets at a steady level. 😊🥹


I had headaches and tingling/burning in my hands and feet. I also had a red face but thought it was menopause.


Itching was the worst. Fatigue and headaches later. It’s a challenge but, I have more good times than bad.


Two years ago, at age 78, I noticed severe itching after bathing. A physicians assistant noticed elevated hematocrit. (58) and elevated bilirubin and referred me toa hematologist. Eventually my jak2 was found mutated on bone marrow biopsy (painless) so we did phlebotomies and hydroxyurea to maintain good levels.
Itching is gone, but I was treated for skin cancer this year. I agree that a good hematologist matters. I have had several gout attacks this year, but no one knows why, they just increase the allopurinol. jjd

In reply to @lylespeace "What is PV?" + (show)

What is PV?

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Good morning, @lylespeace, PV is Polycythemia Vera, a blood disorder.


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For me it was slight vertigo that made me not as steady on my feet, loss of appetite, and just feeling “off”.. At the time I thought I may have had a brain aneurysm/ tumor… Blood tests revealed PV confirmed with a positive JAK 2 test..


Ocular migraines, itching after shower or bath and night sweats.


Sooo... I'm really not sure if this is whats going on with me or not. But here's what I've been experiencing since March:

I am a very active person. Prior to these symptoms I would wake up early, take care of the animals, make lunches, go to the gym, head to work and walk up to ten miles, then go out with friends or hike after work.
Slowly I began to notice it was getting harder and harder for me to wake up and stay awake in the mornings. I would go take care of the animals and then curl up back on the couch to sleep until I had to get ready for work. I didn’t really think too much about this, I just figured maybe I was coming down with something and my body needed the extra rest. But this happened most mornings in the beginning of March, and if I want to be completely honest, I can back track this to the end of February.
Now, I am realizing that walking, or too much exercise will often trigger some of the symptoms, mainly the chest pain, dizziness/lightheadedness, and the weird feeling in my lungs. The next day I will end up needing to sleep or lay down all day. Even walking my dog can trigger some of the symptoms, and because that’s usually no more than a 30 min walk, I use that to gauge how I may feel the rest of the day. I have been avoiding the gym, and trying to be mindful of my activities overall to minimize the fatigue and these symptoms.
And yes, I am following up with a cardiologist first because this leans more toward heart problems.
The only thing that has been popping up really odd is my bloodwork. The first CBC I had when them symptoms began was a high Hemocrit.
Friday was really bad, and I went back to urgent care, expecting everything to show up normal like usual. But all three of my CBC were high: RBC, hemocrit, and hemoglobin.

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