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

@cetzler
I’m 73 and was diagnosed 4 yrs ago with ET, Jak2. My platelets were in the 400’s, and an oncologist tried to put me on Hydroxyurea right away. I balked at that, and found an MPN specialist who said I could wait till the platelets hit 600 before starting that, and recommended 2 low-dose aspirins for the time being.
My platelets have been rising a bit over the years, but still not on the HU. I suppose at some point it would be wise to take it, but I’m not there yet.
It seems the medical community as a whole is not really “up” on the MPN’s and we need forums like this to sus out things for ourselves. Everyone is different, health and history-wise, but that’s my story.
Blessings to you!

@cetzler
Take a second opinion and your platelets count not so high that HU be started . It’s just my opinion but check with your drs then do accordingly
There have been cases of body getting used to platelets count around 6 lacs and without medicine with no harm . Feel once HU starts , our body’s dependence increases and then stopping may not be easy
Me 65 year old male on low dose HU for last four years and count is around 6.5 lacs and trying to find out a way that HU be stopped but my dr says NO clearly

@cindyem thanks for your words of confirmation! Yes, I am hoping my doctor will be willing to monitor me without continually pushing me to start Hydroxyurea

@hariom1961 I have had two opinions and both wanted me to get on the Hydroxyurea. Since my platelets went down over 100 points with just baby aspirin, I have decided to not go on anything else for now. Hopefully I can just monitor counts for awhile

@cetzler
I didn’t start treatment until my spleen started aching due to the enlargement. My Mayo Clinic specialist put me on Ojjarra which has worked beautifully on my spleen and elevated platelets.
Best wishes on your journey.

@hariom1961 I have had two opinions and both wanted me to get on the Hydroxyurea. Since my platelets went down over 100 points with just baby aspirin, I have decided to not go on anything else for now. Hopefully I can just monitor counts for awhile

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!

@cetzler I’m not a doctor but I think your anti-inflammatory diet has made more of the difference than the aspirin. I understand your hesitancy because who wants to take HU?? But your doctor wants you in it for a reason, you may be able to keep the dosage low.

@cetzler I’m not a doctor but I think your anti-inflammatory diet has made more of the difference than the aspirin. I understand your hesitancy because who wants to take HU?? But your doctor wants you in it for a reason, you may be able to keep the dosage low.

@cetzler
That's great! I'm trying St Joseph's chewable baby aspirin as I've read it's more effective than the coated aspirin.
Hoping it helps as it seems to have helped you.
Thanks for sharing...every piece of information helps with this rare blood disease.