Cold hands and feet!

[ArchieCatPurr]

Hi, I have been suffering from extremely cold hands and feet from long before I was diagnosed last year. Anyone else have the same symptom relating to ET JAK2?

[Auggie17]

yes I have had cold hands and feet for most of my life. I am 69 and was diagnosed with ET/ Jak2 in 2021. I believe I have progressed to PV but don’t have a lot of data to back it up. My specialists have never indicated that cold hands and feet are a part of the MPN’s but I believe they are.

It the temp falls below 40 degrees, my hands go numb and turn blue. I hope they someday recognize this as a symptom.

[Lyndjs]

I also have this, for many years, even before being diagnosed with PV. My haematologist thought it may be Raynauds and has told me to talk to my GP. Hopefully another forum member will be able to help, from the ET side.

Take care x

[gardner99]

I have suffered from cold hands and feet for years I was diagnosed last year ET Jak 2. I'm on Hydroxicarbamide and aspirin now, but on cooler days I suspect I'll still have the same problem. Luckily we have a dog who likes to sit on my feet, so she helps!I also bought a rechargeable hand warmer for the winter months, and we sometimes use a wrapped hot water bottle to heat the foot of the bed.

Good luck.

[Purplebailey]

I have suffered from this in the last few years and it certainly seems likely to be related to the MPN and blood circulation in some way. And although some of my symptoms have greatly improved on clopidogrel, it doesn't seem to make a difference to the cold hands and feet. Movement helps, even just a 20 minute walk, and I use fingerless gloves (even last week- thank you Scottish summer) and a very thick pair of wolly bed socks that are loose enough to be kicked off without properly waking up once I am warm enough!

[ArchieCatPurr]

In my opinion this is most likely a symptom of my. ET (JAK2), I also seem to have some sort of numbness in each finger, all digits being affected.

[Nc3500]

yes same mine turn purple how cold they get very painful I also have et JAK 2 I have always been cold iron a little low but since ET 2 years it’s been different so I feel it’s related not much you can do for it stress makes it more painful