Essential Thrombocytosis: What amount of hydroxy do you take?

Yes, he does.I thought it was a lot also. I asked him the same question and he said that is standard in my situation.

I take 500 mg. of hydroxyurea once a day. Had a blood draw yesterday but I have not yet received the results. I started off with 1 million blood platelet count and after a few months my blood platelet count made its way to 450,000 which is high average. I had a blood draw yesterday but I am not aware of the results at this time.

The one symptom I have that causes me the most discomfort happens to be my legs that ache all the time. Tylenol 500 mg. helps a bit.

Hydroxyurea had me drowsy all day long because I took it in the morning. Now, I take the hydroxyurea around 9 p.m. and the drowsiness during the day dropped dramatically.

So pleased you joined this group.

I’m in an 81 also.

I don’t have ET, but have PV… I’ve been on HU since diagnosis in spring of 2021… take 1500 mg 3 days and 1000 mg the other 4 days of the week.. I take the HU at ~ 7PM every day… The only side effect I know of is a slight thinning of my hair… I stay as active as I can, ride a bike, long walks with my dog, and eat relatively healthy… So far, no fatigue… I go for monthly blood draws which have been good so far.. Platelets became low, but my oncologist assured me that they are not at a level that would necessitate a change in dosing… I consider myself lucky that l am tolerating a pretty high dose of this drug..

Blood draw today. Platelets were down from 11/2. I know the platelets go down when I take the CBD gummies but the hematologist is against CBD. I don't know whether to continue or not. Going to call my PCP tomorrow and get a regular check up from her.

I am JAK2 positive with ET secondary because of the JAK2..... the more I learn the more confused I get..

Hi
My haematologist has also increased my hydroxyurea dosage. What I’m wondering is whether or not this affects anybody’s stomach. I can’t tell whether it’s just some of the worry or this whole blood disease that causes my stomach to be upset a lot of the time or whether the increased HU is just a matter of getting used to the increased dosage. Would love to hear from anyone about side effects that they’re experiencing in relation to this medication. I am also extremely fatigued these days and I guess that’s just the disorder .
Cheers
Diane

When I first started on HU I was very tired. Now I am on 500 MG 3 times a week (MWF) and my body is adjusting to it, I have a tired day occasionally but other than that I am living a normal life (so far). The more I learn about JAK 2 and ET the more confused I get. Praying for the best for all of us in this group.

Being fatigued is the hydroxy it is a chemo medication which helps your bone marrow to not make so many platelets. You never said what ur platelet count was that ur Dr. increased the med. from what to what, also did he tell you if u have the jak2 gene? I have had this condition since 2005. I was on hydroxy until last year. My platelets are now 478 and why I don’t know but my dr. Is giving me a break no hydroxy for a year. Also, I have the jak2.
Feel better
Debbie v

Hi Debbie
Thanks for your inquiry and your input. My diagnosis began a year ago when my platelets went from 450 to 1200. Then the bloodwork flagged the problem of thrombocytosis .
I began the hydroxy in February 2023 and was taking 500 mg a day. At first my platelets went down got into the 400 range but then the last two blood tests showed platelet counts of over 550. My newly assigned haematologist versus oncologist has increased my dosage by advising me to take 2×500 mg twice a week and one time 500 mg daily. He wants my platelets to be in the 400s. He said that he feels the 600 count that seems to be a lot of the standard here in Ontario Canada is a bit high and he’s targeting to get me down a bit. Thank you very much for your observation of the connection between my chemo medication and my fatigue. It’s very tough when we used to being active isn’t it?
I find this amazing, sometimes causing me to pay too much attention to my blood disease, but most often giving me insights and a sense of camaraderie, knowing that other fellow MPNrs share similar symptoms and worries. Always appreciate any input, and certainly willing to provide any tips wherever I can to my fellow MPN team members.

Oh Debbie I forgot to mention yes, I have tested positive for
jAK2 As well as two other genetic mutations, which place me in what is called in hemoncon language as Intermediate risk for progression.
This is a course worrisome.
But I am staying busy, active, and positive about keeping this mysterious invasion of my body at large!LOL!