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@nohrt4me

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?

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Replies to "I'm also CALR. Started on 500 mg HU daily when platelets approached 800. Took a year..."

Hola, soy CALR también, tomo hidroxiurea desde hace 9 años. Actualmente tengo 40 años.
Tomo 1 gr 6 veces x semana y 1,5 gr el día restante. Además una aspirineta diaria.
Sin efectos secundarios x ahora, salvo el cansancio.

To answer your question, my platelet target is just to keep it in the normal range of 150-400. I've just had two consecutive tests where the platelets were in the range (low 300's), and the white blood cell count is also not elevated, so after 10 months it looks like I finally have a good balance. The doctor has extended my next blood test out to 3 months now, as opposed to 6 weeks. As far as how long it took me to respond to the meds, I was down out of the danger zone from 1700 to the 500 range within a couple of months. It just took many more months of finessing to get the platelet count to stay in the normal range and have the white blood cell count not be elevated also. I've stayed in great shape and drink alcohol in moderation, though I noticed I cannot handle it like I used to. Probably due to the Hydroxy's demand on the liver. Before if I had 4 glasses of wine on an occasion it was not that noticeable, but nowadays I would be plowed drinking that much in a setting.