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How long you can live taking Hydrea (Hydroxyurea)?

Posted by stacerb1 @stacerb1, Apr 20 12:20pm

I was recently diagnosed with ET, JAK2 mutation. Currently taking 500mg Hydrea and low dose aspirin. Question: Does anyone know how long you can live on Hydrea?

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gigi05 | @gigi05 | Apr 24 1:17pm
In reply to @cathy8 "Hi all.having been diagnosed with two mutations jak2 and calf ihave been on double dosage of..." + (show)
@cathy8

Hi all.having been diagnosed with two mutations jak2 and calf ihave been on double dosage of hydrea also injection to stimulate bone marrow into producing healthy cells...felt absolutely dreadful for past two weeks today had my visit turns out my haemoglobin has dropped to 8.6 so going in for blood transfusion next week..good news my platelets have come down from.700 to 450..adviced to drink plenty water..so hopefully transfusion will help

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@cathy8
Sorry to hear it. Staying on top of hydration is important for sure. Best of luck next week. Let us know how you did. Love and strength to you.

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gigi05 | @gigi05 | Apr 24 1:31pm
In reply to @ontheverge "After adjusting to a dose of 500m HU daily, my platelets have been down in the..." + (show)
@ontheverge

After adjusting to a dose of 500m HU daily, my platelets have been down in the low 400K range for months but I am just as exhausted as ever. Iron panels are normal. Folate and B12 are at the top of the normal range.

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Really great that your platelets are stable in the low 400's, and also that your iron panels and folate and b12 optimized.
The exhaustion is hard to deal with. Exercise and movement seem like the last thing you want to do, but really necessary for energy, circulation and feelings of well being. The other 'must' of the lifestyle treatment is plenty of water and hydration.
I'm wondering, did you assess your Vitamin D status? Are you getting 15 minutes of sun at daybreak to reach your eyeballs?

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janemc | @janemc | Apr 25 7:05am
In reply to @cathy8 "Apologies to all my last post should read the two mutations are jak 2 and Calr" + (show)
@cathy8

Apologies to all my last post should read the two mutations are jak 2 and Calr

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Great work on the platelet count, cathy8! Take your meds, drink your water, and know we are all rooting for you!

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