Sweating with PV

[Flimmeri]

I have had Polycythemia for about 15 years.

Phlebotomies control the hematocrit. Does anybody have hot flash type sweating? Comes on anytime and lasts for a few minutes. At nighttime wake up being wet from sweat. This seems it has got worse with years. I also had had AFib for over 20 years. Thanks for your replies.

[21Rosie]

So sorry that you are experiencing this symptom.

I’m 72 and we’ll past menopause but suffering from hot flushes too. They are so much more intense than I recall and seem to start right from my feet and then taking over whole body. Wakes me at night too. My haematologist says it’s a symptom of PV along with the itching.

I must say it does seem worse during our summer - I live in Australia- bring on winter !

I’m sorry that I have no answers or suggestions.

Take care,

Rosie

[Hidden in reply to 21Rosie]

oh yes, the feet!!

[Flimmeri in reply to 21Rosie]

Thank you Rosie. Good to know that it belongs to PV. My hem. dr didn’t think it would cause sweating!

[mark382]

I generally dont feel the cold. I prefer ti be cool rather than warm or hot. I spend half the night sleeping sleeping sleeping outside the duvet, sumer and winter. This has been going on since iwas diagnosed with PV 15 years ago. The last few weeks I have been waking up soaking wet with sweat. I guess it's just another quirk of this odd condition.

[Flimmeri in reply to mark382]

Thank you Mark! It is a nuisance, but nice to know I am not the only “sweat hog” with PV.

[ainslie]

I have not heard of that as a PV symptom, may be worth getting hormones checked as it can be a hormone issue

[Flimmeri in reply to ainslie]

Thank you! I would think my hormones are settled by now, I’m 74.

[ainslie in reply to Flimmeri]

I should perhaps explain my answer, a hot flash only lasting a few minutes is less likely to be MPN symptom and more likely hormonal, my experience with MPN sweats in the past was that it was most of the time , like a clammy feeling , could last for months for some reason. This was before my PV was controlled with meds, I dont think being 74 is necessarily a exclusion for hormonal sweats, or hormonal treatment if needed but I hope you feel better soon

[hunter5582]

Many people with MPNs sexpreience night sweats. Here is just one source on this topic.

What Causes Night Sweats?

Why do people with MPNs experience night sweats? MPNs cause the body to produce excess levels of cytokines, a type of protein that causes inflammation. Sweating is one of the symptoms caused by these increased levels of cytokines.

According to Dr. Kuykendall, night sweats are more common for people with myelofibrosis and PV than for people with ET. People he sees in his clinical practice might have night sweats caused by MPNs and not even know it. Instead, they blame thyroid issues, a hot climate, symptoms of menopause, or medication side effects.

mympnteam.com/resources/nig....

[21Rosie in reply to hunter5582]

thank you Hunter !

You certainly are a wealth of knowledge and know exactly how to access the literature to back up replies.

I really appreciate reading your responses…..improves my meagre knowledge of this part of my life and health.

The sweating and itching are a daily reminder of what is going on below the surface !

Rosie

[hunter5582 in reply to 21Rosie]

You are most welcome. Those inflammatory cytokines are quite pesky! They really do drive many of the symptoms we experience. Bringing them under better control is an important part of managing a MPN.

All the best.

[monarch5000]

I was diagnosed with PV in 2016 at which time I had night sweats, burning feet, red eyes and cheeks, dizziness, itching and ocular migraines. Started taking the immune system boosting drug Pegasys interferon once a week. All those symptoms slowly resolved by 2018 and have never returned.