Hi, I am getting hot flushes that seem to have been increasing in frequency through the day and night in the last year or so.
I am 65 and am 17 years past the menopause.
I was diagnosed with ET 7 years ago and am on Hydroxy and Aspirin. Hydroxy needed to be increased recently but platelets now controlled.
Would the hot flushes be ET and Hydroxy related or post menopause do you think?
Anyone else with similar symptoms?
Thanks, Suzy
The short answer is that hydroxycarbamide can cause rigors. If the symptom started after the HU dose increase, it is suggestive that it may be dose related. It could, of course, be something else. Best to have the issue checked out by your care team. You may need a dose adjustment or consideration of a different medication if this is a side effect.
Thank you so much for your helpful reply Hunter.
could be either or something else. The MPNs and various drugs used to treat are very personal. It’s complicated. I am on 90 mcg peginterferon weekly injections for ET. Night sweats started when dose was upped to 90 from 68, happened for no more than 3 nights after injection. Then it stopped in a few weeks presumably when I had adjusted to the higher dose. I was quick to report this at start to my hematologist as I have reacted to 3 ET drugs and INF is the best for my situation. I’m 72 and otherwise feeling good.
I was diagnosed with ET at 50, breast cancer at 51, and PV at 52. I'd had severe hot flashes (as we call them in the US) since my late 40s. Chemo ended my periods, and the hot flashes continued. I was on HU from about age 52 to 63. Since, I've been on Jakafi. When I look back, I see that I had severe hot flashes (several times a day) for a number of years, due to menopause combined with PV. The last few years the flashes have lessened a lot, maybe down to a few a week. Maybe Jakafi has helped. Maybe it's the passing of time. Jakafi is very expensive in the US, but recent changes to Medicare has capped RX payments this year, and the cap will be even better next year.
hi Suzi
You are not alone and I feel for you ! I am 70 something and definitely well past menopause. The hot flushes happen every day and night too. I carry small fan in every handbag just to cool face. This is definitely worse in summer and humidity is a nightmare for pruritis but Beta Alinine works wonders. Just wish that there was something as easy for the hot flushes.
I have PV Jak2 and take Peg 67.5 fortnightly…..occasional venesection.
I will be reading replies with great interest.
All the best, Rosjie
I'm 71 and still get hot flushes. They have been decreasing over the years but are still annoying. I'm on no mpn drugs now as I'm post sct.
Hi Suzy. No real answers from me but sending empathy. I’m not (currently) struggling with distinct sweats/flushes but have done and am now feeling uncomfortably hot a lot of the time and having to layer and open many windows. I’m 53, and 3-4 months into interferon treatment after PV diagnosis earlier this year.
I’m planning to ask about it at Haematology and Gynae reviews next month but doubt a clear answer is possible.
In my case my HCT and platelets rose last review (due venesection next month unless they improve) and I’ve been getting more headaches and stuffy/drifty head symptoms so I suspect for now it’s PV and treatment contributing more than anything else.
Sending you cool vibes!
I have had this since 48. I have sarcoidosis as well as myelofibrosis. Really struggled with flushes daily and still have them 22 years later
You could try oxybulilyn, prescribed off label for flushes. I still take this now.
I was on Jakavi 20 mg but had to reduce. This was really effective and now on 15 mg I get the occasional flush.
Talk to you Gp. There are a few drugs they can prescribe off label for flushes.
Thanks for all your interesting replies. It’s good to compare. 🤗
Hello, strangely enough it was this that led me to going to the GP as I was getting "hot head sweats" all the time and should have stopped these symptoms as had been through menopause a long time. They sent me for blood tests which uncovered the high platelet count and went on to be diagnosed (after a TIA a month later) with ET - no "hot head sweats" any more, am on Hydroxycarbamide and 65 years old. Best wishes.
I’m 64 also on hydroxy and aspirin for ET. I’ve also had night sweats and hot flashes since the menopause about 10 years ago. They’ve never really got any better I’ve just got used to them. I have a small usb fan on me all night and I’m constantly mopping the sweat from my face during the day. It’s much worse in the summer. I’ve only been on hydroxy for 18 months at the moment I feel the symptoms are worse at the moment but it may settle a little if the weather gets colder. It sometimes alarms other people as sweat running down your face is very noticeable, I just laugh and say it’s just my age 🥵. My haem says nothing to be done so I’ve given up asking. 🙁.
interesting to read the various experiences of flushes. Mine were only ever face and hairline. It does not match the drenching night sweats on the symptom list f MPN. . Most patients report any time of day and multiple times. Should the symptom list be adjusted?… most replies indicate an age of 60 to 65 plus, so not menopausal.
Hi Suzy, its so funny of the timing of your post as the issue completely relates to what I've been going through lately! I was just talking to my husband, mom and my OBGYN over concerns of more frequent hot flashes. I am 63 years old, menopaused at 52, PV dx at age 40 and have been on 2 aspirin a day and phlebotomys every 3 months. I'm in really good shape, exercise daily and eat well. I too have noticed how I'm frequently overcome by heat when I'm just sitting in a chair. The sweating comes mostly from my scalp and neck and the back of my hair is completely wet! This is so uncomfortable. I don't think its the HU. My OBGYN said its probably my thyroid but my thyroid numbers are always normal! I just read that hot flashes can come back or continue into your 60's...........great! I don't have any solutions for you except to emphasize with you and suggest getting some hormone & thyroid workups. Let me know if you figure this out. I do much better in the dry Arizona climate than in Alaska which is way more humid. Best Wishes........Kerry
Hi Kerry,
Thank you for your reply- it’s lovely to hear from people with MPNs from other countries! I’m in UK so never have the intense weather heat which I’m grateful for. I wonder if your sweats are also PV related because I read that it is one of the PV symptoms. I have ET and my bloods don’t indicate PV but I do wonder if my increased flushing in the last year could mean that I’m changing. I have Jak 2. As you say it’s probably post menopausal which is annoying so may need to follow that up with my GP.
Best wishes,
Suzy
I don't think the sweating is PV related as I have not always had this problem. (Jak2 as well) Truly believe it is related to hormones or thyroid. Not on any drugs either so know that is not the culprit. Our temperature in Alaska as you can imagine is probably the same or colder than the UK. The humidity is high here as it is rainy a lot. The humidity I believe is the problem........Have just turned on a de-humidifier to take out the extra moisture. Think it is working. Let me know if you find out anything. Kerry
Working in a hot climate.
HOT FLASHES
How do you cope with the fatigue.
Twitching nerve in eyelid and slight one- sided migraine -like headache a symptom of E.T.?
