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@garyinmo

I was diagnosed in November '22 with the CALR mutation and have been on 1500mg/daily of Hyrdroxyurea for a while to bring my platelets down from 1700 into normal range with an elevated white blood cell count the whole time, but then when it was eased up to 1000mg the white blood cell count went back to normal, but the platelet level worked back up into the 500's, so now I've been on 1000mg 4 days per week and 1500mg 3 days per week to see if that gets it back down without raising the white blood cell count back up. Going every 6 weeks for a blood draw now. No side effects the entire time, except for some bloating for the first couple weeks from the Hydroxyurea. I'm very active and have not lost any energy or had weight gain.

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Replies to "I was diagnosed in November '22 with the CALR mutation and have been on 1500mg/daily of..."

I'm so glad HU is working for you and you're not having side effects.

I'm also CALR. Started on 500 mg HU daily when platelets approached 800. Took a year and an increase to 1000 mg M-W-F to get them to 400s. That's where I've been for the last five years (I'm 69 now) with one or two jumps to the low 500s. Very mild side effects with HU that exercise and diet changes helped.

Doc said that CALRs are less prone to clotting, so she's happy with mu maintenance dose. Wondering what your hemo's platelet target for you is.

Also, seems to me that CALR patients take longer to respond to meds than those with JAK2. Anyone else notice this?