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What acceptable level of platelets do you shoot for on HU?
Blood Cancers & Disorders | Last Active: Oct 6 10:05am | Replies (77)Comment receiving replies
@mjfp49
Hello. My platelets were over 600 when I started taking 1,000 mg daily HU. I’ve only been taking it for 9 weeks and my last blood draw showed platelets down in the 200’s. My Dr told me to keep taking 1,000 mg a day but I’m wondering if it’s time to ease up on the dosage. I haven’t had many side effects, definitely more exhaustion and recently some headaches and leg/hip pain.
Replies to "@mjfp49 Hello. My platelets were over 600 when I started taking 1,000 mg daily HU. I’ve..."
@lindy25
Hello, I had platelets 1100 and I was taking 1000 mg of Hydrea daily, but soon my platelets number attained a normal level and my hematologist reduced dosage immediately to 500 mg daily. I continued that way and some months later my platelet number diminished to 270. At that moment I reduced my dose to 500 mg daily 5 days a week, because low platelet level is not a good thing. My hematologist (professor of medicine) agreed with my decision.
I told you these because I'm convinced that you are right to reduce your dosage.
Best regards.
@lindy25
Your counts are very similar to mine but on a faster timeline and a higher dosage of HU.
When my platelet count first got above 600k my oncologist put me on HU, one 500mg once a day every day. That was early this year. That brought my count down each time and at my last checkup it was in the low 200s. However, I was having some neuropathy which concerned the PA so she told me to leave the HU off on Saturdays and Sundays and take 500mg/day only five days a week. I go back for a checkup on Oct. 2.
(She liked the 200s platelet count but not the neuropathy. My red and white cell counts were also way down at the bottom or just below normal, but she was okay with those, although I'd like those higher.)
Therefore, your dosage is a lot higher than mine and brought your platelet count down much faster. 200s are toward the lower end of normal for platelet count, so maybe your doctor will reduce your dosage next time. ?? Everyone is different, of course, but it wouldn't hurt to discuss it with him, as is true for any of our concerns.
Prayers and best wishes for a good outcome.
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@lindy25
If you can keep your platelets at 400 or less with less drug that would seem like a good thing.
Some doctors seem more inclined to push hard and others to back off HU when possible.
I think it's personal to each patient's ability to handle the drug and remain stable .