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

mjfp49, you put it perfectly.

"Everyone seems to do a different dance with the drug depending on the doctor."

My oncologist is happy as long as my count is below 500.

That's still "high," but life is certainly better than when my count was in the 700s.

I'm a 72 year old female, MPL-driven ET.

I’m 74 and taking HU 5 days a week. My platelets have been under 500 and stable for the past several months. Recently went up to 649 so my Dr. increased HU from every other day to 5 days/week. I’m hoping this brings me under 500 again and I hope to plateau there.
I don’t know if my symptoms are from HU or ET, but I have almost constant lower leg pain in my bones and occasional toe jabs.I want to keep my dose of HU as low as I can. I also have had a complete thyroidectomy, so I feel like I’m functioning on pills day and night. Levo in the morning and HU at night. My hope is to control platelets without another increase in HU. It’s a balancing game! I’m wondering if the leg pain ever leaves? Anyone else feel like me—constant lower leg pain and frequent toe jabs? I wake up exhausted from leg pain!

I am 77 and recently diagnosed with ET with concern for MPN/MDS overlap. My oncologist referred me to another and that appt is on 9/28.
I take 500mg HU daily and struggling with side effects. I also have Hasimotos and take 75mg f Levoxyl daily. My lower calves bother me on a daily basis. I put on Aspercream before bed to help me sleep.
Current platelets around 650.
Was a very active woman prior to all this... it has knocked the wind out of my sails for sure with daily exhaustion.
Getting old sure isn't for sissies!
Best to you!

@mumblipeg Yea! I wear old lady support socks and it helps! My toes will cramp and freeze up any time I flex them in any direction, annoying! My doctor says platelets under 600 is acceptable if I haven’t had any issues or clots. I stick around 400 They jump around and I take 500 mg six days a week.I have PV JAK2 and just turned 60, female. It ain’t easy. I get a lot of tooth pain from the meds but I just deal as the other meds have many more side effects and are extremely expensive.

Thanks for sharing .
See my doctor tomorrow to decide about going back on HU.
Need to keep the platelets down without making me anemic.
It's a constant balancing act between the drug and the platelets.
Hopefully as your body gets used to the drug the side effects will lessen.

@mumblipeg I am now on 100 mcg Besremi and 500 every other day Hu. No leg pain or other issues except occasional headaches and digestive issues.

What level were your platelets at when you started.
What level are you at now and does your doctor want them as low as he can push it or happy with high normal?

@nypara66 That’s interesting about the toe cramps. I’ve been experiencing the same thing when I flex my feet …even a couple years before my ET diagnosis. Same with my hands!

@pps26
Hang in there., I’m a 76 year old female also very active. Was diagnosed with ET JAK2 mutation in April this year..I had to start with HU very slowly because of side effects.
Digestive, headaches etc. It’s an emotional roller coaster in the beginning…. the body has to adjust to the new normal. My platelets were over 900k and now in 450 range. My mornings are best and that way I can stay active. Afternoon into evening fatigue is the worst side effect. I really try to take a daily nap that I use a meditation app for. Puts me right out for about 1 to 1.5 hours. Really helps . Think of HU as my daily vitamin that helps me live to see my grandkids grow up. Better than the alternative. Best to you my MPN friend!

Thanks so much for your reply! I too, having many issues taking HU - however love your outlook on it - 'my new daily vitamin'! Yes too, I feel like I'm at the top of that roller coaster!

Best to you as well! xo