Started Hydroxyurea: How long to see decrease in counts?

Omg the nights sweats are killing me! I’m in the middle of menopause and taking HU for PV so who knows which one is even causing them? They are on and off all day also. No hormone therapy allowed b/c I’m already at risk for blood clots so I’m literally just sweating it out. My oncologist just called in a medication that he says has been around a long time and helps so we shall see. I’m hoping it’s more menopause so this won’t be ongoing for the rest of my life being HU will be a part of it…

does HD have rebound if you stop taking it?

Hi @winmil99, Many medications have a rebound effect if stopped abruptly. The same goes for HU (Hydroxyurea). According to Merckmanuals.com, “Too-rapid withdrawal of hydroxyurea can result in rapid rebound to very high platelet levels and platelet cycling.”

I know you’ve been waffling about starting this medication. I hated the thought of needing to take medications too. But I did, and now, 5 years later, I’m still here living a long and productive life. There comes a point when it is a matter of risk vs reward. You’ve been diagnosed with ET that also involves the JAK2 mutation. This basically means that there is now a DNA defect that will allow your body to generate platelets without a shutoff. Too many platelets can cause strokes, blood clot, excessive bleeding, etc.

Hydroxyurea has been around for decades. It’s the first line medication for ET and PV and it’s been effective in slowing the proliferation of red blood cells and platelets in patients who have the mutation. So, to do nothing you run the risk of catastrophic side effects or you can take a medication to help prevent clotting and strokes.

I can’t remember if I shared these articles with you or not but they may help you to understand a little more about what is happening right now.
https://www.verywellhealth.com/jak2-mutation-5217909
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https://www.verywellhealth.com/when-to-worry-about-high-platelet-count-5186732
What are you fearing the most about starting HU?

I have been on Hydrea for about 2 months along with baby ASA. I decide to take it after my platelets were close to 2 million. I am 50 years old and didn’t want to risk getting a stroke. I have been taking Hydrea with no side effects. My count has decreased to 710,000. I was taking 500mg daily for about 1 month and now I take 1000 mg on the weekend and 500mg Monday- Friday.

@mamsgirl1998, I know you considered your options, including getting input from members about choosing treatment in this discussion you started:
- Essential Thrombocythemia: Making treatment decisions https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/

Like you, @janannaideal2 also recently started treatment with hydroxyurea. I moved your post to join this discussion:
- Started Hydroxyurea: How long to see decrease in counts? https://connect.mayoclinic.org/discussion/hydroxyurea-2/

@mamsgirl1998, two months in, how are you doing?

I am doing well. I exercise 4 days a week and working on my diet gluten free and low carbs. I am going to start seeing a dietitian. I feel I made the right decision for me.

I started Hydrea 500 mg daily. . And then the doctor bumped me up to 500 mg Monday through Friday and 1000 mg on the weekends. My blood count went from 1,183,000 on January 29, 2024 to 710,000 on April 2, 2024. I think that everybody’s results probably very. I am feeling fine. I don’t feel any side effects. I do try to exercise at least 4 to 5 days a week and watch my diet.

I've been on HU 3 1/2 years now. Platelets over million when I first started. It took about a year to get dosage right. I'm on 1,000mg HU and baby aspirin. I was asymptomatic before, now just seem slower & tired, but I'm also old, so what is from ET and was is from years. My counts are in 300-400 range.....

Because of fear of the effects of Hydroxyurea I put off taking the pills, 500mg for 2.5 years, until my PLT count was 2057. Now, a year and a half later my count is down to the low 700 range. I've had no side effects that I can tell other than relieving the intense fatigue I had. But I also take a slew of holistic pills, and every day organic ginger, about 2/3 of an ounce in a fruit smoothie. So I suggest, go for it and see what the drug does for you!

Good afternoon, @mam121555, my 1st dose of HU (500mg) was mid January, this year. I have had ET for about 5 years, or better. I was very leery, as I said because of the side effects. I reluctantly 'gave in' to my Oncologist recommendation and start HU in Mid-January. My Platelets have been up and down, showing little to no change. (1,200 - 1,600)
Starting this week, my regime will be 500mg daily and 1000mg on week-ends. I pray this will work for me. I have also noticed my hair thinning and increased fatigue, so I am not looking forward to the HU increase. I pray that all will be well with you, myself and others that have health challenges in our lives.