Overheating

[Hydrox]

Does anyone else with ET get very hot and sweaty even when the temperature is low, inside or outside. I seem to be getting worse, even thinking of cutting my duvet in half, me having a 4 tog and my husband a 14 tog. Today for instance the temp in the house is only 18 and I am sweating at times. Maybe it is just my age as I am 71. I was diagnosed with ET 7 years ago.

[Inca]

Oh yes!! Find myself saying 'is it hot in here'!!!Hubby has to put on extra layers and shut down the stove....same in bed ,I throw off duvet ,he is frozen! I am P V 9 yrs getting worse with this 'hot' thing,now on Rux but just the same.7 9 now,think I am 21 !!!!!!Good Luck.

[Hydrox in reply to Inca]

Glad to hear it is not, just me, as my husband says. If it is a symptom of ET then why are we not told about it when diagnosed. I was told the hydroxycarbamide would bring the platelets down but nothing else. Not told it was a cancer but given Macmillan leaflets. Now because I am stable, I see a specialist nurse 3 monthly and collect my meds. Not sure if this is enough.

[Inca in reply to Hydrox]

Well I am well checked, live in France and their Health System is excellent.....but when diagnosed nearly 10 yrs ago ,we were not warned of skin cancer either,so have suffered that like many of us,now completely cover up,heat of summer here I just stay in the house!!!

There is so much now they are learning.

[Eadaoin in reply to Hydrox]

I’ve had ET for 20 years and never experienced night sweats until I started Hydroxy 3 months ago in preparation for heart surgery. So I assume that the Hydroxy has been causing the overheating. The dosage had to be increased up to 2 grams to bring down the platelet count. Now it has reached the target there is a slight reduction in the dose. This seems to be making a difference and lessening some of the side effects. I’ve learned that each person reacts very differently to the drug and needs more/less to make it work. Hope you get some relief soon.

[Wyebird in reply to Hydrox]

I have fab support. It means the world to me. It means someone cares. After 3 yrs it seems that I’ve stablized. Too early to get exited. I get seen approx every 2/3 months plus GP blood tests and blood nurse phone calls to discuss results.

All might change if platelets behave themselves from now on.

[Aime]

Hi, it seems to be a symptom of too many of any kind of cell. I have too many red blood cells and go through weeks when I’m absolutely plotting, then calm down for a few days, then it starts again. Hubby and I have two single beds pushed together. This means I can have different bedclothes without him freezing. I find my chill pillow helps a lot.

Every sympathy Aime xx😺😺

[Hahag]

I'm always sweating so bad me and hubby have separate rooms he snores like crazy I don't sleep insomnia quilt on quilt off window open window closed

[Tiff84]

Yes! All the time. I was hoping that getting on treatment would possibly help, but unfortunately it hasn’t as of yet. I was diagnosed in 2013. I’m only in my 4th week of treatment so hopefully that helps. Do you have really bad night sweats also? I used to, and it would make me feel extremely sick in the morning. It would seem no matter how much water id drink, I’d still feel dehydrated and not well. I found somewhat of a solution though. I found these sheets that are actually meant for night sweats. The material dries quickly and keeps you cool. I was reluctant to try it but, the reviews were good so figured, why not? Then, they also have what’s called cooling gel pillows. This also surprisingly works. My pillow stays cool all night, and makes it so the back of my neck doesn’t get too hot. Then, I also got a fan to work with my air conditioner, to keep the air circulating. I must say, I hardly ever wake up sweaty anymore, and I feel a lot better!:). Hope this helps. Oh, I found this stuff on Amazon

[JackLina]

Hi. This where I am now and I'm 67! It's a different overheating to that which came with the menopause and before. I had a theory that it happened when I was due to take another dose but it isn't behaving like that now. I have a cooling under-blanket, which works very well. Dangling feet out ot eh bed also helps to some extent but I do think we can control even this problem with low inflammatory diet. Hope you find your answer. ATB. x

[Cja1956]

After being diagnosed 11 years ago with ET and now diagnosed with PV, I had my first experience with night sweats about 2 weeks ago accompanied by fever. My hemo told me to come in the next day. My platelets were really high for me (about 800,000) and I had developed anemia, as well. He increased my Jakafi and put me on antibiotics. I am off the antibiotics now because they made me sick But think that the extra Jakafi is helping. I go on Thursday again to my hemo to check my numbers. Wish me luck!

[Fuil]

Night sweats were a confirmed symptom for me! They've pretty much destroyed one of our mattresses already!