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Concerned about medications for ET JAK2

Posted by carefor @carefor, Apr 24, 2023

I have ET JAK2 55 female normal labs except platelets slightly elevate I took baby aspirin for two weeks platelets still high then my hematologists put me on hydroxyurea with 500mg daily no change after two weeks so he added blood thinner 5mg 2xday has anyone else been put on blood thinner?

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janemc | @janemc | May 25 6:32am
In reply to @lilyn "@loribmt Thank you so much for your response. At the onset, the itching was treated with..." + (show)
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@loribmt

Thank you so much for your response. At the onset, the itching was treated with loratadine and famotidine and something else I don't recall. It didn't bring relief, however; it was somewhat manageable without the hives, etc., skin problems. One blood draw came back with platelets controlled, but HCT at 47. Dr put me on an additional 1500 mg hydrea on top of the 500 mg per day . I noticed the problem was continuing to escalate and eventually questioned the Dr about titrating the dose. She said no, the HCT levels weren't low enough . . . at that time my HCT was 38!
Platelets were 185, absolute neutrophil 1.18, and absolute eosinophils 0.96. I continued the dose she wanted, and I now am in misery. The correlation of symptom increase and dosage increase seem to be the problem. I will be calling her tomorrow.

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@lilyn

I'm so sorry you're not getting the help you need. I'd say it's time for a second opinion.

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lindakay55 | @lindakay55 | May 25 12:05pm

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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lilyn | @lilyn | May 25 12:06pm

@janemc

Thank you, janemc! I've contacted my dr. today and am awaiting a return call.
As you say, time for a second opinion if I'm not taken seriously.

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lilyn | @lilyn | May 25 12:15pm
In reply to @lindakay55 "I need some advice or input. My hematologist just up’d my Hydrea again. My HCT is..." + (show)
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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@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.

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janemc | @janemc | May 25 1:01pm
In reply to @lindakay55 "I need some advice or input. My hematologist just up’d my Hydrea again. My HCT is..." + (show)
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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@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.

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lindakay55 | @lindakay55 | May 25 1:35pm
In reply to @janemc "@lindakay55 Unless you're lucky enough to respond perfectly to HU, it is really, really frustrating to..." + (show)
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@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.

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@janemc yes I do always take it at bedtime but this last increase has just wiped me out. Seriously, I don’t think I can increase anymore. Wow! I don’t know what to do. I hope it passes but it’s been two weeks now .

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