Feeling hot?: I have been recently diagnosed with... - MPN Voice

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Feeling hot?

woodyfingers profile image
5 Replies

I have been recently diagnosed with JAK2 mutation and PV.

I seem to feel hot when others around me do not. Would that be the PV causing that?

Also I'm in for venesection tomorrow, will that make me feel "fresher" than I do.

Still trying to get my head around it all.

Thanks.

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woodyfingers profile image
woodyfingers
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5 Replies
Aime profile image
Aime

Hi woodyfingers, I find when I’m due a venesection , my first symptom which is getting worse is my temperature control. My husband will be frozen in the car or house and I’ll be absolutely cooking! Not pleasant I know! I hate standing in queues, in shops, etc as I start feeling light headed too and dread making a fool of myself by fainting.

I find cotton clothing with layers which I can take off the best option and cool drinks help also, particularly water.

Hope that helps, every sympathy Aime x😺😺

bordeauxgirl profile image
bordeauxgirl

when I first was diagnosed with PV + Jak2 I was on Venesections as well , I too had these really hot spells when my hair would drip with water as if I had just come out of the shower ,in the meantime my friends around me were as cool as cucumbers. I would go to bed with cold wet flannels wrapped around my feet and never covered my feet at night as well.

I have had PV+ JAK2 four years now and but have 'grown out ' of these hot periods so there is hope at the end of the line. Hope the same happens for you .

Chicagopv profile image
Chicagopv

Yes, I itch and get warm easily. Hard to discern how much is pv and how much is menopause. Get hot especially when exercising. Face turns red.

friendofpiglet profile image
friendofpiglet

Well, I too have PV JAK2+ with a tendency towards high platelets. My problem is opposite to yours. Despite the warmest UK February since records began I am still muffling up with several layers! It needs to get above 25° for me to shed layers!

As regards venesection, I feel a little out of it for a couple of hours but then I feel better than usual for a number of days. We are all different though - be interested to know how venesection affects you, with luck it'll be the same as me - makes you look forward to them!

Andy

katiewalsh profile image
katiewalsh

Hi. I also have trouble with getting too hot (and it’s not menopause) but I’m ET jak+. I carry a small portable fan with me, ideally one that mists cold water on me. It helps. Katie

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