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Concerned about medications for ET JAK2

Blood Cancers & Disorders | Last Active: May 25 1:35pm | Replies (26)

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Profile picture for lindakay55 @lindakay55

I need some advice or input. My hematologist just up’d my Hydrea again. My HCT is like 46 and platlets normal anyway he wants HCT down to 43 or below and when it went up a smidge he is now increasing my dose two more times per week. I take 500mg on Tu, Thur, and Sun and 1000 mg on M, W,F, and Sat.

Every time he increases my dose it just wipes me out. I’m so tired. Does this happen to you? It also impacts my mood. Anyone else have these impacts??

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Replies to "I need some advice or input. My hematologist just up’d my Hydrea again. My HCT is..."

@lindakay55

I completely understand. They like HCT below 45, and lower. My hematologist increased my Hydrea by an additional 1,500 mg per week. When my new lab work revealed my HCT at 38, and platelets normal, I wanted to titrate back down to original dose; she said my levels were not low enough and wanted to continue with the increased dose!!
My issue isn't fatigue as much as it's insane 24/7 itching.

@lindakay55

Unless you're lucky enough to respond perfectly to HU, it is really, really frustrating to find the dose that's exactly right for you.

You WILL get there!

In the meantime, please let yourself rest when you need to. You may not look like you have a serious medical issue -- but you do.

Some people find taking HU just before bedtime makes them feel less fatigue during the day. That might be worth trying. Don't ever take HU on an empty stomach, though.