Have your platelets gone up?

Posted by exon9 @exon9, Jun 10 7:07pm

I have essential thrombocytosis with CALR exon 9 mutation, no JAK2. I've been taking 500 mg hydroxyurea every other day for 2 1/2 years. About six months ago my platelets have started going up. They've been at 400, now they are at 495. I hate the thought of having to up my dose, but may have to.

Anyone have this problem? Thank you.

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jill45 | @jill45 | Jun 10 9:05pm

Hello. My mom has essential thrombocytosis & her hematoligist said the platlets may fluctuate, even on the hydrea 500mg, once a day, as hers did, was coming down, then went up, now recently 383. Apparently as long as they are under 600, with ET, its okay. Replying from Canada. Blood work every 3 months for her. Diagnosed Sept 2024.

nohrt4me (Jean) | @nohrt4me | Jun 11 8:46am

Also CALR. My platelets swim around in 400s with occasional spike into 500 range and have done x 6 years. Hemo says this is considered "stable," and not to worry about it since other bloods are OK (except for a spike in LDH one time that I never got a good answer on, and that's normal last check).

Ann Kucharski | @annkucharski | Jun 11 10:30am

The platelets will bounce. Anytime you experience stress, inflammation lots of reasons. I think if they return to an acceptable number that is the goal. I would worry when my platelets would go up. Then sometimes, the medication was increased. But I am happy to report we've decreased HU treatment and so far, my platelets remain in the 'normal' range.

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