At the risk of sounding like one of Terry Wogan’s listeners ‘Is it just me?!’ But I can’t take the cold anymore I’m on Hydroxycarbamide (500mg weekdays and 1000mg weekends) Apixaban 5mg per day I’ve got ET Jak 2 . Everyone I work with seem to be fine with low temperatures but I’m SO COLD!
Solidarity with any other Mr/Mrs/Ms FREEZE!
It's cold!!! I'm cold!!!
I am not sure if this is relevant to what you are experiencing, but this is noted "If you experience any of the following symptoms, call your doctor immediately: fever, chills, ..."medlineplus.gov/druginfo/me...
I do not think this is a common warning nor do I know if it is relevant, but thought to pass it on just in case.
I feel your shivers. I used to be very cold-tolerant until I became so iron deficient. Then I became quite sensitive to cold weather. Feeling better now that my iron levels are improved. That might be something else worth checking on.
All the best. Stay warm!
Thanks Hunter
Hey there Plavers... 
I'm Post ET/MF, CALR+ Type2, ASXL1+ & Von Willebrands Syndrome (acquired?)
Funny you should mention this but I too really feel the cold now like never before... & it's painful. My whole body aches & there seems really no way to get warm through to my bones... Even scalding hot showers only help a tad...
I'm guessing that in my case, the scarring of my bone marrow is progressively offering me less & less protection from the elements... But mere speculation on my part... (?)
Pain killers help, but I intensely dislike having to rely on them in any way...
All I can really say is that I feel for you buddy, or rather, I feel much the same as you do...
By the sound of things... (?)
Stay safe, happy & well...
Steve
Thanks Steve
Yes, I can relate to that. I have post PV MF and feel the cold more easily now. However, allow for the ‘cold snap’ that has hit all of Western Europe this week. I’m in France at the moment and they say it was the coldest 1 April in 50 years! I’m interested in what you said Steve - that the scarring of your bone marrow could account for it. Also your pains and aches. I’m getting problems with pain in my feet and especially ankles. An MRI last year showed up cuboid fractures in my right ankle and I had to wear a medical boot for months. No idea how it happened. Eventually got better and was back walking normally and now I’m having a lot of pain with the other ankle and don’t know how or why. I had just been coming to the same conclusion. Could it be down to my scarred/fibrotic bone marrow?? 😳The side effects of our MPN disease on our bone marrow is not something I’ve seen discussed. Any wisdom to offer anyone? Thanks in advance!😄
Ettiel
Hey Ettiel...
Hope you're doing well...
Yes, aches & pains come on early for me just prior to the offical change from Summer to Autumn... We've barely had a normal summer... so much inclement weather here on Australia's east coast this year... They say due to the "La Nina" weather pattern... We've had these weather patterns previously... but not w/ the rain we've seen this time around, past 18mths). I'm dreading winter, & ours are nothing compared to yours...
My speculation concerning Bone marrow scarring, may be a factor... but it's just speculation in the absence of any other logic I am afraid Ettiel...
Ettiel, are you a "runner' at all? That might account for some of your ankle pain? I know my running days are basically over because when I do, my right knee always plays up, (Posterior cruciate...). However, cycling doesn't seem to aggravate my knee much at all really... (?)
Naturally, we are all also suffering from that other "terminal" malady too... Older age... 
Stay safe & well & let me know if you learn anything new connected w/ your ankles too...
Best wishes
Steve
I've got ET Jak2 and take Aspirin. I was always crazy sensitive to heat but cold didn't bother me much at all. Now I'm often feeling cold even when others aren't. Sometimes I am so cold even turning on the heating doesn't help until it gets to the point where the heat starts to bother me as it always used to and then I feel it's too hot and I'm too cold all at once, argh!
Yes had the same hier now bit better working as chef so keep me worm by pizza oven
Hi Plavers,I totally relate to your account of feeling cold. I am ET Jak2, took Hydroxycarbamide for a year and a half , plus aspirin. Then changed to Pegasys.
I get Raynauds, so have white (dead fingers) even in the house when touching cold or wet things.
When I go out I wrap up , with thermals, scarf, gloves and a windproof
Parker ! I have a Hot Rock hand heater in my pocket which I always have to use. Once I get cold, it feels like it goes right through to my bones. I need to keep my core body temperature up, hot drinks and soup helps.
I wondered whether it was related the ET/Drugs and have been going to post on this wonderful site.
The Haematologist thinks my Raynauds, which I already had, is made worse by my ET.
Keep warm my friend
Nellin
I feel exactly the same. Have PMF and take hydroxocarbonide but am constantly cold.
Hi Plavers, I have always felt the cold. It seems (with hindsight) that as ET progressed my tolerance to cold increased. This change occurred to the extent that my family were complaining when they stayed about the coldness of my house while I happily walked around in a tee shirt.
However, since going on Hydroxy and in particular since my prescription was increased further (similar to yours) I feel the cold worse than ever 🥶. I do warm up exercises first thing every morning . These get my blood flowing, reduce my intolerance to the cold and help with my aches and pain. Also, as I live in Ireland I never go outside without bringing a woolly hat and scarf to keep me warm. Take care & keep warm☘
Thanks Woodlandgarden, yes I'm always attached to my wooly Hat and Scarf too.
I started on hydrea on 12/1/21 and after a few weeks I started getting chills not 24/7 but a lot. I am trying to boost my immune system since I am catching stuff, doing acupuncture and hoping I can cut down on them its definitely a side effect of the drug.
Thanks Lindabomba, look forward to hearing results of acupuncture.
Cold sores
Vomiting and Extreme Cold
Chest infection and cold !
Anybody take two baby aspirins each day?
