Raynauds

[Nc3500]

hi has anyone developed Raynauds syndrome from ET ?

[Fjdjdjdjd]

yes! The winter is really hard. Anything below 10 degrees and I have no circulation in my fingers and they end up yellow. I always have gloves and those heated gel packs

[Murdoch01 in reply to Fjdjdjdjd]

Me too, not looking forward to the Winter 😫

[NCB1983]

yes! Me too!

I never had it before but now my fingers (and toes) go white and painful when they get cold and then take ages to come alive again. It’s really annoying! Especially annoying as it often happens when I’m on the tennis court and I can’t hold my racket properly

Spoke to my GP about it and they told me not to get my hands cold! Helpful, not! Spoke to my haematologist and he upped my dose of aspirin to two tablets a day, one in the morning and one in the evening.

I suggest you speak to your haematologist

Good luck!

[Nc3500 in reply to NCB1983]

yes I saw my doctor on Wednesday and he told me to do the same to up my aspirin and also experiencing eymrtha with it and if that continues go to 325 aspirin

[Bluesloth1]

I’ve been diagnosed with Raynaud’s and I believe it’s related to ET. In the winter I get chilblains so badly on my hands that my nails come off. I’ve been prescribed slow release Nifedipine which helps.

[Bluetop in reply to Bluesloth1]

Ouch! my nails just get dreadfully deformed and crumbly, but loosing them must be horrid. I learned how useful nails are! I hope the Nifedipine works. I have PV and I take lots of precautions to try to keep my hands warm -just bought some electric gloves for outdoors, but it seems just a draft of cold air will sometimes make them numb. My consultant suggested I try a very small dose of iron -and so far my hands (but not feet) have been slightly better than last year.

[ETket]

I’m not sure if I’ve developed it since having ET or it has got a lot worse in recent years (I’ve always had cold hands and feet). Fingerless gloves are my friends (in the summer I tend to just wear them in the mornings) and I wear them inside, normal gloves are for outside!

[NewBloom]

Hi, I have PV and was diagnosed was Raynauds about 2 years ago. It's never been confirmed if the two are related.I'm building a rather large collection of socks and gloves. Anything to keep them warm. The hand warmers you can buy in supermarkets or Amazon work well.

[Spanelmad]

Try wool socks from Nordic Socks works for me