Night sweats

[Birdlady2021]

Hi all , last night I woke up with night sweats , I’m 70 so it’s not the menopause ! Is it connected to ET jak 2 pos . I also have a condition where my Bp drops when standing up called POTs , orthostatic hypotension also I’m starting on Ferritin pills for low iron . See Gp again Thursday he sees me regularly and always doing blood tests . Because MPN consultion only checks every 4 months ,I’m on HU and sodium pills. Many thanks

[Otterfield]

Night sweats are a very common symptom of MPNs, so try not to worry. As it's new for you, it might be a good idea to call the haematology nurse for reassurance.

[monarch5000]

I had some night sweats, burning feet, POTS syndrome and occasional spinning room type dizziness eight years ago when I was 62, just before I was first diagnosed with polycythemia vera. I was first offered HU, but psychologically that drug made me feel depressed because I knew it didn't stop disease progression, hence my future was uncertain.

Then I watched a YouTube about PV where the doc said interferon could slow or stop progression in many cases so I searched out a doc that was known to be open to prescribing it. Within about 6 months the night sweats and burning feet went away and later the POTS syndrome and occasional spinning room dizziness did as well. None of these ailments has returned during the past 7 years I've been on Pegasys interferon.

[21Rosie]

I’m 70 something…..and well past menopause but those hot flushes are now worse than way back then ! Humidity and temperature seem to make it worse but it is a symptom of my PV. I’m on Pegasys 67.5 fortnightly and this seems to be working beautifully at the moment. I haven’t needed a venesection for 6 months so prepared to put up with the flushing and itching . I presume (but don’t know for certain) that hot flushes could be symptom of ET too. I sympathise with you as it’s very uncomfortable.

Hope your haematologist can confirm for you.

Rosie

[AirconBob]

As the others say, night sweats are part of the fun. I just lie on my back and chill - they seem to pass fairly quickly. Beware of the Ferratin though - Low ferratin is part of the deal too. The one time I took ferrous sulphate my RBC spiked, and took a couple of Venesections to bring back down. Now we just accept it as part of the symptoms.

[Exeter21]

I had bad night sweats on HU it completely negated the HRT patches I use following Hysterectomy. I came off HU & onto Peg Interferon & resolved itself . Julia 👍

[Otterfield]

A number of people are saying that their night sweats improved on Pegasys. Mine actually got worse, as did the itching. We all react differently on different drugs.

[Arnoldthecat]

Hi. I have ET diagnosed last year and was getting night sweats for about 2 years prior to diagnosis which is thought was the menopause but now i realise wasn't. I was on Hyroxy for 6 months before moving to Interferon a couple of months ago. The night sweats have improved on both drugs but i still suffer if its warm at night, i can be fine all day but the minute i lie down in bed i start getting hot, like somebody has turned on the central heating!

[Scrollernut]

I’m 80! And they stared about a year ago🫤. E T. With jak positive and on Hydrea three times a week. Go figure at our age. Almost makes me feel 50 again!!!!!

[ciye]

Sadly it's part of the condition.... I was looking forward to getting through the menopause....

[luvinretirement]

I suffered from night sweats as well, associated with the JAK2 PV. I also had pretty bad itching for 15-20 minutes after a shower (it didn't matter if water was hot or not). Interesting enough, both went away when I transitioned to Mylo Fibrosis (MF) a few years ago. Just another data point for you. Good luck dealing with it.

[Wyebird]

Hi sounds as if you have a caring GP.

I’d check up with heamo about ferritin pills.

Even though I’m low in haemoglobin I can’t take any tablets because my ferritin levels are to high🥴.

[Birdlady2021 in reply to Wyebird]

Yes he is ! Oh really I can never get hold of my heam I suffer with other conditions as well, I’m seeing Gp tomorrow again will ask if my iron is very low

[Wyebird in reply to Birdlady2021]

Good luck so pleased you have a good Gp

[EANgardengirl]

This is also part of my ET condition. It’s like going through menopause again. Not fun. Laying down at night, or switching positions, back to side, seems to turn on the burner.

I just went off HU. My kidneys did not like that med. Waiting to see a new Hematologist in Sept to explore next options. Sounds like interferon is a more commonly used treatment with MPN group. ?