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

Posted by mjfp49 @mjfp49, Sep 19 3:42am

Hi, I read that a number of people say their doctor is content if the platelet count is in the high 400k or even 500k range on HU at a lower dose.
Is it really necessary to push the platelets as low as they can go on a higher dose?
Everyone seems to do a different dance with the drug depending on the doctor.
What's your experience?

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arcane | @arcane | Sep 25 5:58pm

In reply to @loribmt "Hi @arcane. Having your platelet level drop to such a low level had to be a..." + (show)

@loribmt
I have only
been home for 3 month, for the entire year,

Lori, Volunteer Mentor | @loribmt | Sep 25 8:14pm

In reply to @arcane "@loribmt I have only been home for 3 month, for the entire year," + (show)

@arcane
You’ve only been home for 3 months out of this year? I’m so sorry to hear that! That’s a long time to be away from everything that’s familiar and normal. Were you in the hospital for the entire time or recovering in a convalescent facility? Are you home now?

arcane | @arcane | Sep 26 4:16am

In reply to @loribmt "@arcane You’ve only been home for 3 months out of this year? I’m so sorry to..." + (show)

@loribmt I was in and out of hospital sometimes it was 2 weeks sometimes 3 weeks sometimes 17 days and lots of a few days at a time. I had some terrible infections and pneumonia. I have been home for just over 2 weeks and I feel good.

arcane | @arcane | Sep 26 4:22am

In reply to @loribmt "Hi @arcane. Having your platelet level drop to such a low level had to be a..." + (show)

@loribmt No this was not my first admission I have had so many admissions. I have only been out of hospital for just over 3 months of the year, the rest of the time I was in hospital on and of. I am sick of hospitals and don't want to be admitted again for the rest of the year.

lindy25 | @lindy25 | Sep 27 11:57am

In reply to @dmcj "I’m concerned about hair loss. How extreme is it. Also I heard ulcers on the ankles..." + (show)

@dmcj
Hi
I have not experienced hair loss (yet) but many people have said that it’s a side effect. It sounds like there are soooo many different stories that it truly just depends on how your body responds to all this!
Hang in there and be sure to talk to your Dr. I message my Doctor frequently, every time I have a question or concern.

cetzler | @cetzler | Sep 29 12:38pm

I was recently diagnosed with ET with the JAK mutation. My platelet counts were upper 500s. I started taking 2 baby aspirin a day and tried an anti-inflammatory diet and my counts went down to 454! My hematologist still wants to start me on Hydroxyurea because I am 61. I don’t feel it is necessary, since my counts went down over 100 just on baby aspirin. Does anyone know why I should still go on Hydroxyurea if I can keep the count down with aspirin. I am very healthy so I don’t think my age should matter that much. Opinions? Thanks!

barbie201 | @barbie201 | Sep 30 6:56am

In reply to @susita "@nypara66 That’s interesting about the toe cramps. I’ve been experiencing the same thing when I flex..." + (show)

@susita had bunion surgery 3 yrs ago got MRSA IN wound..antibiotics caused digestive issues. After surgery platelet issue. Bone marrow test then diagnosis of thrombocytosis. Platelets stay in 400s..not meds yet BUT lots of pain in feet...worse in foot that wasn't operated on. Toes stiff, burning, and are twisting! 2nd now crosses over big toe. Anyone experience this??

mjfp49 | @mjfp49 | Sep 30 7:35am

In reply to @barbie201 "@susita had bunion surgery 3 yrs ago got MRSA IN wound..antibiotics caused digestive issues. After surgery..." + (show)

@barbie201
Never experienced anything like that effecting the feet...but others have.
Hope it gets resolved.

janemc | @janemc | Sep 30 8:18am

In reply to @barbie201 "@susita had bunion surgery 3 yrs ago got MRSA IN wound..antibiotics caused digestive issues. After surgery..." + (show)

@barbie201

So sorry for what you're suffering.

ET clogs up our circulation with over-abundant, over-sized platelets. This can create pain in the extremities.

Has your oncologist ever suggested that you take a low-dose aspirin? That can help your blood flow a bit more easily.

barbie201 | @barbie201 | Sep 30 8:21am

In reply to @janemc "@barbie201 So sorry for what you're suffering. ET clogs up our circulation with over-abundant, over-sized platelets...." + (show)

@janemc I was just going to ask her that question in an email through my patient portal. Thank you for pushing me!! Much appreciated. Have a great day

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