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@williamsjen

Thanks for the information been taking 500mg daily platelets dropping from 1036 to 796 took another test today 20 days later and only dropped to 732 they now want me to take 1000mg and be tested in another month. I really don't want to take that high dosage. How tired will I be ? I normally wait until 8pm to take my bill to not feel tired
I work daily just frustrated I thought they would at least decrease more by now. Also frustrated working with NP as I only met Dr first and she been on leave for her baby being born
Thinking about going to another dr.

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Replies to "Thanks for the information been taking 500mg daily platelets dropping from 1036 to 796 took another..."

Getting the dosage right takes time.

In the old days, they'd give you 1000 or 1500 mg per day, and you'd have bone pain bad enough to send you to the ER. Now they give you 500 mg to start, but dosages often have to be adjusted up.

In my case, getting the dose right took a year. I started HU 500 mg the same month my mom died, and they were adjusting the dose the year I had to close her estate and clean out her house. I noticed no fatigue. I actually felt better on the HU. But our bodies and attitudes are all diff.

If you are nervous or think you will be too tired, call the office and ask if you could add an extra dose two or three times a week for the next month.

ET progresses slowly and responds to treatment slowly, and that can up the anxiety especially if you want things resolved quickly. And who doesn't?

Hi williamsjen,
I understand your concern about the dosing of Hydrea. At least you started low and saw a good effect. I met my O/H once only and she said she was starting me on a “low dose”; however , when I looked that up I saw Hydrea 500mg twice daily is not low does for someone like myself who weighs 108 pounds! I do not want the side effects of Hydrea either! I work also and have an active life I want to keep enjoying.
I really want to know is what is causing my recently diagnosed, for only one month, elevated platelets. I went in to have my very enlarged right ring finger proximal interphalangeal joint re-evaluated by this new insurance I have as it is very enlarged with no pain. Other group did not know the cause or what it was. Other doctors have not been concerned and just say it is arthritis. I have a nonpainful enlarged right sternoclavicular joint also just thought to be arthritis also. Now I am learning that arthritis can cause high platelets and I think that should at least be addressed and assessed as a possible cause for my high platelets before diagnosing that I have Essential Thombocythemia.
I am blessed to have no pain from my enlarged joints and no symptoms from my high platelets. I just want some answers and possible solutions.
Thank you for listening and I hope you get a new doc soon. I think I need some more different opinions on my case also. Also, I have no JAG2 mutation and hope they did check me for MPL and CALR mutations but I am not sure they did and I have no results given for those.
Have a blessed positive day.