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@garyr443 my ET is caused by the same mutation-CALR 9- that you have. My doctor said I was born with it. It just activated when I hit 73. Mutations are weird like that! I started with 1000mgs HU once a day. That was in April. My platelets dropped like a stone! They are now at 256 from 867. My red blood cells have also dropped big time. My white are just hovering above the “too low” level. My CNP lowered my dose to 500mgs once a day, but last blood test showed the platelets still at 256 and a continued fall of my red blood cells. I have an appointment soon and will see what the doctor thinks. I was utterly exhausted before the HU was lowered. The skin under my nails is dark grey to black. I wear nail polish to cover that up! I still feel tired each day, but it isn’t so bad now. I never nap! I eat like I always have and exercise a lot. Everyone is different, so you kind of have to decide what your goal is and how to reach it. You probably don’t want to have a stroke or heart attack from a clot, so that should weigh in as you decide your path forward. There are other drugs besides HU. ET is not well researched yet, so the older drugs used to treat the condition successfully are the ones the doctors like to prescribe. Still, all the feedback on these treatments has to come from us, the patients. So, speak up else how will our doctors know what this is like! I speak up a lot!

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Replies to "@garyr443 my ET is caused by the same mutation-CALR 9- that you have. My doctor said..."

@lynns51 Hmmm....how do you know you were born with your mutation? That would seem to indicate that it was inherited, rather than acquired, like most of us. I must have acquired mine at 52 because it didn't show up in my bloodwork until then. Sounds like you've had good results from the Hyroxyurea. My platelets have been up and down ever since my ET was discovered in 2014, although it's been fairly stable, otherwise. Red blood cells will drop as a side effect of HU. It destroys some of your red cells. This is why I've been taking Vitamin B12 and Folic Acid from the start. They manufacture red cells. During my experiment with cranberry juice, I had expected a greater rise in my red cells, since I wasn't using HU for a month, but instead, my red cells only came up about halfway toward normal. I've become aware of some of the other drugs being used for ET, but I would be reluctant to try them, from what I have read here. In any case, the life expectancy for me with ET and using HU is identical to the life expectancy for anyone of my age (74 in October) and sex: 86 years. So, I have no complaint about that.