Anyone with PV have insensitivity to cold?

Posted by djab @djab, Dec 16, 2022

I was Dx. with polycythemia vera several years ago, and has been managed well with Hydroxyurea, last summer I was unable to handle the heat outside and have noticed this winter I can not feel the cold on my skin, Lately short of breath excersion, Lightheaded in the morning, My MD seems to think it is not related to my DX, asked if the red blood cell is changed with this medication, she said the cell is bigger. Been to a endocrinologist labs totally normal. Now heading to a neurologist. Just wondering if anyone else has had any of these symptoms..

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learnandlive | @learnandlive | Dec 24, 2022

Hello sorry for delayed response. I have had PV with JAK2 for almost 5 years. I have had itching, sensitivity to heat/cold and itching because of heat/cold. I also have have fatigue. was on Hydroxea and just switched to Jakafi this year. Jakafi improved all those conditions . Only need phlebotomies 3-4 times a year. My doctor wants to explore how sleep apnea is affecting PV. A sleep study is scheduled.

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