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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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laughingmagiciandm | @laughingmagiciandm | Jul 14 7:57pm

Just joined today, while searching a related problem and just wanted to thank everyone here and add im going through the same thing. I have extreme heat sensitivity now, to the point where I dont even expose myself directly to the sun. I have 0 problems with the cold (even at near freezing temperatures) and can barely feel it, but the heat is making it impossible to go outside someday. Thank you everyone for your posts, I finally feel like im not going insane.

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Lori, Volunteer Mentor | @loribmt | Jul 16 10:23am
In reply to @laughingmagiciandm "Just joined today, while searching a related problem and just wanted to thank everyone here and..." + (show)
Profile picture for laughingmagiciandm @laughingmagiciandm

Just joined today, while searching a related problem and just wanted to thank everyone here and add im going through the same thing. I have extreme heat sensitivity now, to the point where I dont even expose myself directly to the sun. I have 0 problems with the cold (even at near freezing temperatures) and can barely feel it, but the heat is making it impossible to go outside someday. Thank you everyone for your posts, I finally feel like im not going insane.

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Hi @laughingmagiciandm If you’re sensitive to heat, this is a nasty summer for that! I’m right there with you. My inner A/C unit is permanently stuck in noncompliance mode to cool me off! 😅

By the way, welcome to Mayo Connect. I’m happy you found us and have been able to chat with other members who have PV and are sharing their experiences with heat intolerance.
How long ago were you diagnosed with polycythemia vera? Are you currently in any treatment program such as hydroxyurea?

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