Night sweats - PV

[scousesbird]

Does anyone with PV suffer from night sweats? My husband gets them awful and when his local consultant phoned yesterday she said it was nothing to do with PV. Just wondered if anyone else has them and it has been acknowledged as a side effect.

[clubdino]

Oy. Doctors. Night sweats are definitely a symptom of PV. I have ET and I get them occasionally. Here is a link that clearly states that night sweats are a symptom of PV:

rarediseases.org/rare-disea...

[Hidden]

Some meds can cause night sweats and they can also be stress related.

[Hidden]

Hi scousesbird.... I have PV and I get night sweats and day sweats. It is absolutely a symptom of PV. Not much helps but I’ll have a fan on me when I get an episode.... it helps me get through it for those few minutes. Mine are really awful too... it’s a very deep hot sweat !!! Really awful!!!!

[Ebot]

Hmmm. Maybe time to move to an MPN specialist? I would be concerned having my PV managed by someone who doesn’t recognise night sweats as a symptom of PV. It’s a factor that appears on every MPN symptom checker / QoL survey etc!! Am sure others will give you advice as to management. Wishing you well.

[scousesbird in reply to Ebot]

Thank you, as I said his local consultant! He is under Professor Harrison's team now thank goodness. We will be discussing with them next week. But thank you for confirming. We knew any way but she just contradicts constantly.

[hunter5582 in reply to scousesbird]

Good for you all for seeking proper care. Too many MPNers stick with docs who just do not have the KSAs to provide optimal care.

[scousesbird in reply to hunter5582]

To be honest the local (useless) one referred him to Prof Harrison's team for guidance!!! Even though we have asked the GP to refer him and he wouldn't! So he got to the right place eventually. They are the best of the best for sure.

[hunter5582 in reply to scousesbird]

Note to GP: "You are fired!" He would not write a referral to appropriate care = improper medical care management. I am glad he did get to the right place. MPN expert care is vital. Good on y'all for making it happen.

[EleanorPV in reply to scousesbird]

Glad he finally got the referral which was needed. Have a think about updating your local haemo once he has his appointment.

[Ebot in reply to scousesbird]

You’re in the safest hands with Prof Harrison and her team! All the best.

[Maisie10]

Hello. I have PV and have night and day sweats. I usually find that I get more when I am due to have a venesection then they settle down a bit.

[Aime]

Hi, yes night sweats are definitely a well recognised symptom of PV. I am negative to the jak2 and Xeon mutations so I’m now classed as having idiopathic erythrocytosis but it still means I have too many red blood cells.

I go through spells of night sweats, with sweats actually trickling down my neck - it’s horrid. Every sympathy- cool drink, cool pillow and cotton sheets help a bit.

Kindest regards Aime xx😻😻

[mark382 in reply to Aime]

Out of interest is idiopathic erythrocytosis classed as PV.

[Aime in reply to mark382]

Apparently not but symptoms are identical and I do keep wondering if theres another mutation which is yet to be discovered or I've not been tested for which will come to light. Take care x😻

[mark382 in reply to Aime]

Thanks. Put question in wrong thread,but got the answer anyway. I agree, they will probably find something else in the chain further down the line as it wasn't that long ago that they found JAK 2 mutation.

[mark382]

I can't say I sweat, but I feel as if I'm burning up. Spend most the time outside of the duvet, summer and winter. In fact I don't really feel the cold. I've been in a short sleeved shirt whilst others have sat on a radiator in a woolly pulley. I mentioned it to my haematologist and she said we'll keep an eye on it. Must admit I've never mentioned it again. Just think its one of those things.

[Vtr1000]

Hi scousesbird, just a suggestion that maybe a cooling mat (like the pets cooling mat) under the bed sheet may help keep your husbands temperature down. A friend suggested it to me as I work nights and trying to sleep during the day in the summer can be toasty.

[Aime in reply to Vtr1000]

Yes the cooling pillows help a bit x😻