New to Hydrea for ET

My 72 year old wife (Becky) has been on hydroxyurea (Hydrea) since summer of last year and has had no side effects at all. None! She started on 1x500mg capsule daily but when the platelets were not going down enough was put on 2x500mg 3 days per week then 1x500 on the other days. That helped and she is now down to 8 capsules per week.
As background, she is a very active person having competed in 15+ half ironman triathlons, run over 20 marathons and completed one full ironman.
The disease, (ET) and the medication has not slowed her down at all. Age has as she hasn't been competing for the last 10 years but again, it's age that has slowed her down a bit. We still have fun biking, running and swimming. Hopefully you will find the same thing though I know people are different and react to meds differently. Good luck,
Steve

I’m not sure that your response was to me as I’m still trying this figure this chat out but thank you for sharing about the hair and encouragement. I hope it’s all a breeze! Thank you.

You are not doing anything wrong. I have been on HU for 4 years now. The first two years I have been on and off the med to see what happens with my platelets. But the last two years I have been on it, started with a lower dose of 500mg. It goes down to 600 and goes back up. I tried 1000mg and went down to 569 and went back up to 800 sometimes 900. Now I am on 1500mg that's getting the best of me, the headache and tiredness is out of control. I have an appointment next week to see what 3 dose has done. I have tried Anagrelide but stopped it 1 day later because side effect was heart palpitation. Sometimes our body doesn't respond to how we want it. We stay positive and look for another solution. Its a fight we going to have to put up with for a while. Hung in there, wish you all the best.

Thanks for the information my numbers went down from 1100 to 743 but now went up to 768 she wants me to start taking 2 500mg away. Seems like a lot, I will try it and see how it does until I see her next month. I had no problems with the 500mg

I have the same concern Dr wants me to go from 500mg to 1000mg I have reservations but going to try it for a month until I go for my next blood draw
Seems like lot my numbers went down good and then seems to stay around 760 65years old very active
I take them at night so I don't be tired in the daytime
Will chat with you to share results next month.

Just an FYI, regarding the dose that Becky has gone through.
She started with 500mg/day and that was helpful but not quite enough.
Doc then put her on 2x500mg on M/W/F and 1 on the other days.
It was a "happy medium" to not be on 2 every day. It seemed to work well.
Again,
Good luck,
Steve

Hi all,
Honestly, I have not taken any Hydrea although it was prescribed for me on 1-10-25 due to high platelets on routine blood lab. I too was concerned about the side effects of Hydrea, especially since I was prescribed 500 mg twice every day! I have no symptoms and feel just fine. Yes, I am 65 now but have always been very healthy and active and still am. Exercise helps me feel better when I start to stress so I make sure to get about one hour of cardio daily and stretching and yoga at least 20 minutes. I am 5 foot 2.5 inches and weigh no more than 108 pounds, have no other diagnoses although I do have white coat syndrome. I have checked my BP daily since my December 2024 doctor visit which showed elevated BP. If I sit for 5-10 minutes before taking my BP at home, it is normal. Today it was 110/68 pulse 73 even before going in for more lab work! My platelets are still high, 988, but still down from my first two labs with my taking nothing. My white cells remain elevated some too, but red cells and hemoglobin normal although hemoglobin was low on 2-2-25 lab when my O/H changed her 1-10-25 diagnosis for me of ET to “might be transitioning to PMF”. I do have CALR mutation so know that goes with myeloid proliferative neoplasm diagnosis but I am just not sure the docs really know what I have. I still have my long term almost five years now swollen non-painful right ring finger proximal phalangeal joint which I came in to doctor in the first place to check as my chief complain which still has not been addressed. I have read that chronic non-painful inflammation can also elevate platelet and white cells and just wish my swollen finger joint concern could be addressed before such rash diagnoses of ET and PMF and need for me taking Hydrea. Has anyone else encountered such issues and how do I approach my concerns? Thanks for listening.

I have been on 2 500 mg capsules since I was diagnosed in November, 2023. I started taking it every day and am now 4 days on, 3 days off each week. My platelets dropped from almost 800 to right around 200 and I have been stable for about 6 months. My only side effect was some hair loss - not enough that anyone would notice but me. It now seems to be growing back. Hopefully you won't have side effects on the higher dose and since you did respond to the lower dose a higher one could do the trick. Good luck!!

I don't know what all might be driving your doc's decision to double yr dose, but a 20 pt jump in platelets after a 300 pt drop seems pretty insignificant. It sure would not hurt if you asked if you could build up to that new dose more gradually. He might say no, but at least he'd explain why he wants to ramp up so quickly.

I don't know what white coat syndrome is.

For a while, MPN researchers were looking at all ET-CALR patients as PMF. You might want to ask your doc if he considers all CALR patients PMF. Not sure how that helps you, but might explain the waffling between ET and PMF.

But sounds like the bigger problem is that you and doc are at an impasse about which issue to address first. Would talking that thru with GP help?