My platelet count has increased after a year on HU
I have been taking HU (1000mg per day) for one year for essential Thrombocytosis . I have experienced little side effects and my platelet count have steadily gone down.
My latest blood tests showed an increase for the first time since I started HU. It went from 360 to 420.
Has anyone experienced fluctuations in their platelet count. Is it normal?
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Hi Mikemp,
I experienced the same fluctuations. I was diagnosed with ET November
2022. Started out with 500 mg per day. Unfortunately one pill did not
work. Increased to 1000 mg per day. My side effects are not bad. Sometimes
a little tired in the afternoon. My numbers fluctuate between 350 and 430.
My blood work looks fine otherwise, so my Dr. was not worried. My next
check up is late June. Hope my numbers are lower. Have you asked your
Dr. about it? I have the Jak2 mutation, will be 70 years old this month.
Otherwise I am in pretty good health.
Thank you for your reply. I am also 70 and I spoke to my hematologist about it. He said not to worry as it happens. It was just odd since I had seen a steady decline. Nice to hear about your experience. It helps to ease the fears that come along with it.
You are welcome. We just have to take it day by day.
I try not to think about it too much. Wishing you
and everybody else dealing with blood disorders
( I like to call it disorder not cancer) all the best.
@mikemp Those of us with conditions that require regular blood work for monitoring will sometimes see fluctuations. We want to look at the trends, not necessarily a one time result. As is normal, there can be a fleeting reason for a change. Were you feeling unwell for some reason? Dehydrated? Was there a change in your medications, like a new formula/manufacturer? These can sometimes be a factor.
For me, I get two draws a month, one for my multiple myeloma, and another for my kidney issues. The oncology is always done at the cancer center. The kidney values are drawn either at the dialysis center, or at Quest Diagnostics. So, there can be variation in values based on the lab who processes the sample. Another factor to consider.
Ginger
Our platelet count is constantly fluctuating—even people without ET. Your doctor is probably fine with it if it is still under 425-450 and your other bloodwork looks fine, but ask him/her, since we are not doctors. For most people, 420 is nothing to worry about, but again, ask your doctor! 🙂
Thank you. Nothing different health wise. It was just my first rise in a year. I appreciate your comments.
Hematologist said not to worry. I just don’t know anyone else who even has to take HU. My first platelet rise in a year.
Thanks for your reply.
I take Hydroxyurea for PV. My platelets vary monthly! Anywhere from 390to almost 500. I’m 58 and for now my doctor said under 600 is acceptable for me. I don’t have any other health issues thus far and I’m sure that’s a consideration. If they do go higher he said all we do is up dosage. I currently am doing well 3X a week and hope to stay that way hehe Try not to worry. I don’t think anyone’s platelets stay the same when doing monthly labs.
Good to hear that you are doing well with the HU. It was my first increase in a year so it got me worried.
Thank you for your reply. All the best to you!
I’ve been on HU for PV since 2021.. My platelets have dropped and been flagged as low (120 or below) for the past 2 years.. I’ve been as low as 91 which seems concerning but this is not an issue according to my hematologist/oncologist and I actually have felt great thru this to date… I exercise daily; ride the bike weather permitting and swim at a recreational center every day.. HU seems to impact people differently when it comes to side effects and test results..