What acceptable level of platelets do you shoot for on HU?

@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 .

@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.

Lindy,
Thanks so much for sharing.
I feel I may be on the right track...less is more sometimes.
Since I stopped it for 2 weeks
I'm hoping I can reset at a lower dose.

I am 76, diagnosed at 65. Even on HU for all these years, seems I am level and functioning pretty well when my platelets are 500. That is with 2 500mg daily. when my platelets went up to 700. and back up to even 900, the doctor increased the HU to 2 daily and 3 on 3 days a week. I am back down to only 2 daily and my platelets have stabilized at 500. Several doctors have told me they think that is about right for me, it seems. Today they were 500. Seems when I consistently take more HU they go too low and I have more bleeding. It has worked for 11 1/2 years. Hope this info helps.

Yes, thanks...it's a dance...isn't it?
Using the HU and keeping the platelets in the normal to high normal range.
Not too much of one or the other.
I'm 9 years on HU....Caused anemia for the 1st time.
So took a break for 2 weeks and now doing a reset at a lower dose.
See what happens.🙏

I’m concerned about hair loss. How extreme is it. Also I heard ulcers on the ankles are a reason to stop the meds. How many of you have experienced these things and to what degree. Thank you.

My hair thinned a bit...but only that I noticed.
I used to get mouth ulcers but once I switched to toothpaste with baking soda ...never had another.

My platelets vary from 380 to 425 with an occasional 499 on 500mg HU 3 times a week. My oncologist wants me to stay at that dosage because my RBC number is a bit below normal and she doesn't want me to have symptoms of anemia.
I feel fine and go about my life as if nothing is going on except being tired at the end of the day. I'm fortunate that I have an oncologist at The University of Connecticut who has seen multiple patients with this sort of condition. (Of course we butted heads when she wanted to "talk me through" the bone marrow biopsy rather than having sedation but I won out on that one.)

Thanks that was very helpful.
We do have to advocate for ourselves every step of the way.

@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.