Connect
← Return to Anyone living with Essential Thrombocythemia with JAK2?
Discussion
Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: Nov 1 2:25pm | Replies (164)Comment receiving replies
@cec2
Your story seems remarkably like mine. I was diagnosed in 2022 , Jak2, at age 69. My blood counts have always, since the start of this, been in the 400’s and now creeping to the 500’s. But they do go up and down quite a bit.
I’m dreading the day my platelets go above the 600 mark, and because of my age (almost 73), will be advised to go on the HU.
As far as symptoms, I’ve had what I believe are hypnic headaches (headaches that wake you up in the middle of the night) for probably close to 20 years now, so I don’t think they’re related to the ET diagnosis. Also, I am quite fatigued throughout the day, but it really hits around 3 in the afternoon. When I told my hematologist this, she said it was likely my age, and not the ET. Also, I feel like my vision is much worse lately..again, probably my age.. (?)
So I’m just living my life, taking 2 low-dose aspirin a day, and trying not to think of those blood draws until a few days before I know I have to have one.
Best of luck to you.
Replies to "@cec2 Your story seems remarkably like mine. I was diagnosed in 2022 , Jak2, at age..."
Connect
@arti4
Thank you for your reply. Yes, our stories do seem very similar, although my tiredness doesn't seem nearly as severe as yours. But it's hard to know the cause and people all age differently, too.
I, too, am now on two low-dose (coated) aspirin a day. Do you take one twice a day, or both at the same time? When my primary care doctor doubled mine, he didn't say and I didn't think to ask.
600k seems to be both our threshold platelet counts for having to go on HU. I too am dreading that, but with the one recent exception when my count decreased, my counts have steadily only gone up.
I wish you the best in managing your ET and for good health.