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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mjfp49 | @mjfp49 | Sep 22 8:59pm

In reply to @mcsulli "@mcsulli they were 520 a week ago which is why he kept me in HU along..." + (show)

@mcsulli
Thanks for sharing...can you explain the Jak2 gene going from 15 %to 68 %..is that done with a bone marrow test ?

mcsulli | @mcsulli | Sep 23 5:40am

It’s done with a blood test that’s sent to Mayo for testing. No biopsy. I don’t know why many doctors don’t re test after a few yrs. I know two others with pv and they have had it longer than I have and never re- tested.

jwjacobs1 | @jwjacobs1 | Sep 23 1:52pm

My doctor is monitoring my platelet count, I am 63 and my platelet count is going up between 5-50k every 6 months, I am now at 700.
I have CALR varient and a TET2 finding. My doctor says that she will start getting concerned about my platelet count once I approach 1000. In the meantime, the only med I am on is a baby asprine 1x per day.
The Diagnosis right now is essential thrombocythemia. and we are monitoring without any specific intervention

nypara66 | @nypara66 | Sep 24 6:02am

In reply to @jwjacobs1 "My doctor is monitoring my platelet count, I am 63 and my platelet count is going..." + (show)

@jwjacobs1 Wow that seems pushing it at 1000? My doctor says under 600 before upping the HU. I fluctuate between 350-500? Every month it’s different but if it stays below 600 and I take the baby aspirin , More meds make my teeth hurt constantly and I just feel like crap. I’ll stick with the 500mg once daily six days a week. I have PV JAK2+ and am 60 yr old female.

mumblipeg | @mumblipeg | Sep 24 6:19am

In reply to @nypara66 "@mumblipeg Yea! I wear old lady support socks and it helps! My toes will cramp and..." + (show)

@nypara66 Thanks! Support socks do help! Cramping toes is also an annoyance for me. Guess it’s all part of ET. Any increase of HU makes my hair thinner so that’s not something I look forward to. Hoping to stabilize and cope better soon!

arcane | @arcane | Sep 24 6:25am

I was in hospital with pneumonia and my platelets dropped to 23. My doctor was very worried and I ended having 2 transfusions of IVIg. It took awhile but my platelets finally rose to over 200 count.

mumblipeg | @mumblipeg | Sep 24 6:25am

In reply to @mcsulli "@mumblipeg I am now on 100 mcg Besremi and 500 every other day Hu. No leg..." + (show)

@mcsulli Thank you! I have discussed interferons with my Dr. and she’s not keen on adding or changing from Hu. I have autoimmune issues and had a complete thyroidectomy—making me a poor candidate for interferon's like Bestemi I guess. Glad it’s working for you!!

Lori, Volunteer Mentor | @loribmt | Sep 24 8:38am

In reply to @arcane "I was in hospital with pneumonia and my platelets dropped to 23. My doctor was very..." + (show)

Hi @arcane. Having your platelet level drop to such a low level had to be a little scary. It’s great that everything is back to normal now after the IVIG infusions.

Welcome to Mayo Connect. Since you’re new to the group, please take time to look through the 80+ health support topics. Feel free to jump in anywhere!

Was this your first time having to be hospitalized?

lindy25 | @lindy25 | Sep 24 10:27am

In reply to @mjfp49 "What level were your platelets at when you started. What level are you at now and..." + (show)

@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.

1pearl | @1pearl | Sep 24 10:33am

In reply to @jwjacobs1 "My doctor is monitoring my platelet count, I am 63 and my platelet count is going..." + (show)

Hi @jwjacobs1 ,
I have those two mutations also and my O/H first thought I had ET in 1/2025 but changed it to PMF 2/2025. She was “hell bent” that I take 500 mg Hydrea twice a day and I refused after reading about it as I had no symptoms then and still do not now. My platelets are similar to yours. I did see a MPN specialist about two months ago and she honestly seemed like a flake! She had not read my chart even and thought I had JAK2 which I do not. She did not seem to believe me until I showed her my NGS report I had in my I brought along and then questioned those results! I won’t be seeing her or the first O/H I saw ever again but do have labs again in about one month. My labs have been very similar and I feel fine so I am not concerned. I am now 67, healthy, positive, and fit as usual.
My opinion is that we all must do what we feel is best for our own situation.
Enjoy the Autumn season

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