Essential Thrombocytosis: What amount of hydroxy do you take?

To gmacookie: My very amateur understanding is that when one of the three proteins that regulate platelet production mutate (for reasons no one understands), ET results. Since this is a disruption of a normal function, ET is technically a cancer.

I am sorry you are having vertigo. That's awful to life with.

Hope you can get swift help from a physical therapist. PTs can work miracles.

Best holiday wishes to all from the Blue Grass Valley of Virginia.

Hello. I have the same problems with my stomach too. Nearly everyday. My haematologist suggested small meals at smaller intervals. I have no gallbladder which makes things worse.
Some days I am so tired until the mid afternoon when I buck up a bit. I have it 13 years now.
I take 500 capsule every evening plus 1.8. of liquid in a syringe to top up to 608. That keeps my platelets level under 400 around 360.
I am a terrible worrier. My family help to keep me going. It could be worry which doesn't help digestion.
I play piano and teach on line. I don't go out to mix because of Covid which scares me. It's a shame that Covid happened because although I have all the jabs here in England no one know whether us people are covered at all! I put up with my tummy pains they are horrible and happen most days after lunch. I hope this helps to know I feel the same as you do. I am nearly 79.

I take 1500mg of HU every other day and 1000mg of HU on opposite days. I, too, am very fatigued but accept it as a better alternative than a stroke or heart attack. I've been on HU for a year and hope that I'll adjust to it (at least mentally) as time goes by.

I was diagnosed with ET in November, 2023 and my hematologist started me on 500 mg of HU twice a day, 7 days a week. As of my last bloodtest two weeks ago, my platelet count has dropped from a high of 692 to 202. Two weeks prior to that my dosage was changed to 500 mg 2x a day 5 days a week. I test again this coming Tuesday and have a follow-up appointment on Thursday and am hoping for further reductions in platelets and dosage! I have been extremely fortunate not to have had any discernable side effects from the HU. As an aside, I was simultaneously diagnosed with microscopic colitis (this is what started my diagnostic journey) and pancreatic enzyme insufficiency ( my pancreas makes almost no digestive enzymes). So I have had a lot going on but with medication and diet modifications I am now essentially symptom free.

Have you tried, can you take, Anagrelide? I've never had any symptoms with it, over 20 years now. Twice a day, 5 mg, taken with vitamins in the morning, before bed. I'm 73.

Thanks I will look it up. How kind. x

My wife just tested positive for JAK2 on Dec 15th, after blood work on Dec 8th that showed the following numbers:
Platelets - 1019
HGB - 17.5
RBC - 58.6
HCT - 53.3
LY - 14
ANC - 8.1
With all these number on the High/high with the low LY we are not scheduled for an appointment until Jan 19th.
We called last week after the JAK2 positive for additional information and to ask about more testing, thinking a bone marrow biopsy would be next. I received a return call from the Oncology Pharmacist with a prescription for Hydroxyurea at 2-500mg tablets twice a day. 2000 mg per day seems high just starting out according to other posts I have read?
The frustrating part is that it certainly looks like she has an MPN, but have been given no more information on whether it is PV, ET, or Myelofibrosis.
I guess we will find out what the next step is on Jan 19th, and I am guessing the Dr wants to see if this high dosage of Hydroxyurea with push the numbers lower after 2 weeks.
Just frustrated with the lack of information, but at least so far, not much in side effects.
Thankful for that.

Every doctor has a different approach but you may want to raise the bone marrow biopsy issue at the appointment on the 19th. My hematologist-oncologist wanted this done before he would prescribe anything for my ET because he wanted to make sure it was ET and not another blood cancer/condition. I was fortunate in that my biopsy was negative and I started on 500 mg HU 2x a day in November. My platelet count was lower than your wife's at 692 and it's now down to 202. Your wife's count is very close to my doctor's defined danger point so that may be why her Rx is for a higher dose. Hang in there - I know this is scary and frustrating!

Platelet levels that high need attention asap, so doc is attentive and addressing a possible danger, but I do understand the frustrations with lack of info!

Yes, ask about bone marrow biopsy. They can often do them under sedation or mild anesthesia if your wife is nervous.

I am so sorry for what you and your wife are going through, btwheels. Hope you will have additional information soon.

Was starting on low-dose aspirin recommended?