Started Hydroxyurea: How long to see decrease in counts?

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.

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.

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.....

TY. I’m not sure what hydrea is but will look it up. My drs all seem to think it’s ok just let me die at 46. I live in this pain. I’m at the end of my rope. Seriously.

Hydrea (or generic hydroxyurea, sometimes people here abbreviate it to HU) is an oral chemo pill that reduces platelet count. If you have essential thrombocytosis (ET), it can prevent complications from too many platelets. Most people tolerate it pretty well.

I am so sorry to hear you are in pain. That's not common in ET, though clots or circulatory problems associated with ET can be painful.

I am not clear from your post or profile if you have ET, but I hope you can get to the bottom of things soon!

I looked it up. I definitely do not have ET. I have a hereditary disorder where I form blood clots constantly. TY though

Hi @katelyn56. We chatted the other day and you’re quite concerned about your daughter who has Factor 8 clotting condition. Since this is hereditary, it appears this came from your side of the family. Are you also experiencing the same debilitating symptoms as your daughter?
Because this isn’t a common blood disorder there’s not a great deal of data and studies available. I’d still recommend requesting an appointment for both you and your daughter from Mayo. Here’s that link again to get the ball rolling.
http://mayocl.in/1mtmR63

Mayo offers hope to so many people who have not gotten answers from anywhere else. I personally know their hematology teams are relentless in trying to find answers and solutions. They have a very deep bench of medical professionals with an incredible array of knowledge and experiences. It may be worth your time and effort to been seen by the doctors at Mayo Clinic. At least you’ll know you’ve done all you can…
Would this be something you’d consider?

Hi. No I do not have it. My other children don’t have it. It’s in the genetic makeup from both parents. It’s extremely rare. 1 in a million. It is called Hereditary Factor VIII blood clotting disorder. It is NOT hemophilia, it is at the other end of the spectrum. The liver makes too many platelets. Hyper coaguability Cleveland clinic is supposed to be the best-very disappointing. No help at all. If I contact mayo and they will say ooo yeahhh we have had that!!! It’s not true. I thank you for your thoughts. I’m not giving up 🩷🩷

Yes, by all means don’t give up searching for answers for your daughter. But please don’t be too hasty to dismiss Mayo Clinic as it is internationally recognized as the #1 clinic in the world. I realize I sound like an advertisement. But I know first hand how outstanding this clinic is when it comes to finding answers to complex health issues. You won’t know until you try.

Sometimes diseases can be so rare that there may not be answers or there may be no cure. But perhaps there are some options for helping your daughter with her clotting disorder to find some normalcy in her life. At least if you try Mayo and then there are no answers, you’ll know you’ve done your best to help your daughter.

Not sure if this is an option but have her doctors discussed the possibility of a bone marrow transplant?