HOT FLASHES: I never had hot flashes but at 69 I... - MPN Voice

MPN Voice

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I never had hot flashes but at 69 I now do. I’m jak2 +, on HU & am either ET or pre-MF. Has anyone else experienced this? Thanks. Katie

12 Replies

Yes I am 68 and get them as well - not soaking wet but annoying and day or night. Am also Jak2 and on HU - thought I had got ride of menopause when I got seriously bad hot flushes

Thanks for replying. I did a bunch of research & learned that women who experienced them during menopause can get them again much later in life. But haven’t found anything about people (like me) who were lucky & didn’t have them in menopause getting them 15-20 years later. You’re right, they are really annoying. Katie

I am ET Jak2+ and on Hydroxy. I get them too, especially at night. They are definitely related to Hydroxy as my dose has been reduced in the last few months and the flushes have improved x

Hi, I have PV jak2+ I get hot flushes ( I am 69) night and day, ten years ago I thought, when do the menopause hot flushes I realise it’s part of PV.....

It maybe related to your MPN. Worth discussing any new symptoms with your haematologist.

Hi Katie, although I am at the right age for hot flushes I am taking Hydroxycarbamide have ET jak 2 and suffer with hot flushes. Many years ago I was told the high platelet count can cause you to sweat. Wearing light layers in the day time can help. Regards Pip

I think I was getting this too before I was diagnosed Katie - particularly at night. When I starting taking aspirin and cut the carbs (hugely) in my diet, it disappeared.

I am 69 and had that real bad last year before I was diagnosed especially during the night. Was diagnosed thus May with ET Jak 2. Have been on HU since and no more sweat day and night, totally disappeared. I am sure it's from ET because I started to have high platelets 2 years ago without knowing. I am totally fine in that respect.

Yes! As far as I'm aware, this is another symptom of ET. I am JAK2+ and ET and particularly when I'm getting close to injection time, the night sweats return. I don't get these in the day however. I'm 67 and well [ast the time of any other possible cause.

Thank you all for your replies and information. Take care of yourselves. Katie

I am so relieved to read that others are having the same symptoms.. though not because they are - I'm sorry to hear that.. but because I'm certain it's related to my ET condition too but just talked to my haematologist two days ago - who literally says every common symptom, is not likely from my ET. However, reading this, it seems so consistent that many of us have this. I am 49, diagnosed Jan 2018 as ET, Jak2 positive. Many of my symptoms cross over into PV and MF - but I think that might be common too. I have bone pain when my platelet count is up.. it's really debilitating so I'm glad that after being on Hydroxy for the last year, the bone pain is down to about a 2 on a scale of 1-10. (bone pain in lower legs and feet) . I also have extreme exhaustion that battle daily and the night sweats started about two months ago, and the frequent and horrible. Nights are the worst. I thought I had menopause already b/c I had hot flashes about 3 years ago... My Dr. thinks the onset of massive hot flashes is menopause. If anyone finds something that is working to help reduce them, please share. They wake me up at night at least 3-6 times per night. Tough not getting good sleep.

I’m so sorry to hear what awful symptoms you’re having. I think I’d pick night sweats over bone pain & complete exhaustion but all are awful! And getting poor sleep can’t be good for you. Hang in there. Hope it improves. Katie

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