Need help newly diagnosed with a high platelet count and the JAK2 gene

I was diagnosed with ET Jak2 over a year ago my PLTS range from 450 - 700 My oncologist said I am fine to just take baby asa no HU until I hit 1000

If you are over 60, have JAK2, you are at moderate clot risk and doc will recommend 500 mg HU per day. Docs usually want you to get a blood count every week or two for a couple months to see if that dose is working. Dose may be adjusted up or down over the first year.

Most people do not notice big issues on the dosage you are taking. I've been on 500 mg per day + extra cap on MWF for 6 years. I have noticed some hair thinning, occasional constipation, canker sores that last 24 hours or more, and dry skin.

My migrains, fatigue, and visual distortions, cleared up after going on HU.

So I would say my quality of life is better on HU.

Most of the people on here do fine with HU. A few don't. Often those with the worst reactions have doctors who start them on high doses of HU (yours is not) or have adverse reaction to all medication. But there is no way to predict how you'll react until you try it.

I too a couple weeks off work when I went on HU because I was afraid I would have adverse reaction. I went back after two days because I felt fine.

As others have noted: Wear sun screen and wash your hands after touching the pills. (I tip mine into a paper pill cup, so hands never touch them.)

Did your doc also prescribe an anti nausea drug? I never had to take mine, but if the HU upsets your stomach at first that can be helpful.

Keep us posted.

Hola, tengo 41 años y tomo hidroxiurea ya hace 10 años.
Tomo 2 comprimidos 5 días a la semana y 3 los otros 2 días.
El síntoma más importante que he tenido es la fatiga. Intento descansar cuando puedo y a su vez hacer algo de actividad física funciona contra la fatiga.
Saludos y suerte, Vanessa desde Uruguay!

Hi, I just saw your post today. It’s great that you were diagnosed early prior to having any problems. I was diagnosed with ET at age 45 and was asymptomatic. Once my platelets reached 1 million, the doctor started me on hydroxyurea, and this was at age 50. If this is going to be your treatment, it may take a few weeks to get it regulated as we all take different dosages, depending upon how our platelet counts are responding to the medicine. I’ve been on hydroxyurea for almost 18 years now and I’m doing great. Best of luck to you!

I started on 500 mg of HU yesterday. I am assuming you should not drink alcohol with this drug or eat spicy foods. I do like to drink a glass of wine from time to time, but now I would be afraid. Any comments on special foods or drink to stay away from?

I have no trouble with occasional spicy food. I don't drink alcohol, but your pharmacist can often answer these types of questions. My mom had many questions about her meds after open heart surgery, and the guy at Walgreen's knew more about her meds than the hospital nurses. Some big hospitals have an "ask a pharmacist" or "ask a nurse" line.

Thanks for the tip about the paper pill cup. Where do you get them?

I get them on Amazon, but you might be able to get them from a local medical supply store. My pharmacy has only plastic.

I have PV and take Hydroxyurea. My oncologist said I can have alcohol in moderation. I drink a few glasses of wine now and then and even Vodka cocktails with no issues or side effects. I’m taking this drug for almost Two years now. It’ll take a few months to get the dosage correct so hang on until your numbers stabilize. Good luck!

Good morning lindagualtieri. I am from Kentucky. I have had Polycythemia Vera (PV) for 6 years (age 65 now). A routine blood test showed my platelets at about 600. Yes, I too have the genetic mutation of the JAK2 (V617F). I am still waiting for genetic mutation superpowers like spiderman but nothing yet. I am taking 500 Hydro (HU) once a day. My platelets are in the 300 range which is normal depending on what blood expert you talk to. Other than fatigue and brain fog late in the afternoon, I have very few symptoms. I believe physical exercise is important. I go to my gymnasium 2 to 3 times a week and feel much better because of it. I am active in my veteran organizations. Most people I know have no idea I have the diet coke of cancers called PV. I have an occasional drink when watching my Liberty University play football and have had no complications because of it. I refuse to give up on the activities I enjoy because for some unknow reason my body decided to mutate. Hang in there and stay frosty. You are not alone. J.