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Totally understand what works for one may not for someone else. I am being watched by my DR every 3 mos and in between by the PA. My platelets in my life have never gone sky high sometimes normal other times 400-500 and couple times a 600 and 700 thrown in there. The HU brought the platelets down to 200 very fast when first took it but a long with it I felt sooo sick constantly for one full year. I kept asking and even pleading if there was something else I could go on and he flat out told me no end of discussion. My PCP even told me no one should be on something that is making them so sick it is messing up their life on a daily basis and yet having to be on it for life, that is when he referred me to someone else. My new Dr has mentioned he would like to see me on something also but for now as my platelets have been in the normal range for 8 mos now we will just wait and watch. I myself have read a lot about what can lower platelets and keep them from getting sticky and being it is all natural and dietary causing no harm decided to try it and so far my platelets have stayed stable for 8 mos. It just may be a fluke or it is working so I will continue it being it is no bother. I see my DR in a few wks and get very nervous each time I go because as he walks through the door he announces the results. So for now I am happy who knows how long it will last. I also have severe CKD which I was dx at 10 so anything I take in medicines I have to be careful due to more injury to the kidneys. I feel I am dealing with a double whammy. Everyone out there on HU and working for you I really envy you and God bless you but for me it was pure misery everyday for a year. Take care.

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Replies to "Totally understand what works for one may not for someone else. I am being watched by..."

@janeto1357
Hu works for me
My big problem is sudden falls

@janeto1357
Hello, I was diagnosed with ET/JAK2 in 2023. I was prescribed HU 500 mg and within one month, it flared up severe neuropathy in the feet which was unbearable. I also was diagnosed with CMT, a neurological disease inherited from by father. My hematologist immediately took me off the HU, and since then, put me on Eliquis, a blood thinner, and two 81 mg aspirin twice daily. My platelets are high and so far have stayed 700-800 range. My doctor feels this is ok for now, but may change treatment plan if the platelet continue to climb.
You mentioned you were also taking a natural supplement which has helped you. I’m very interested to know what you take. I do take several supplements and have for many years, but maybe there is something missing that could possibly help.
I’m 72 years old and I experience fatigue but it could be age as well as ET. Are there other symptoms you and others are experiencing from ET itself? Thank you.