Hydroxyurea side effects lessen over time?

Yes, 1000 is daily dosage. When I was first diagnosed in 2021, my hematocrit was 57. I had several phlebotomies at that time to get the hematocrit below 45. Went from 500 to 1000 where I have stayed for 18 months. Last month I had 1/2 phlebotomy to lower the crit from 47 to 44. My platelets have never been a problem and my only other problem has been severe fatigue. So we are considering switching from hydrea to jakifi. JJD

Yes, daily dosage. Only 1/2 phlebotomy since 2021. Platelets always good, but considering jakifi because of fatigue. JJD

I have been on 500mg per day for the last 6 weeks 4 weeks ago my platelets finally returned to normal 430 (her lab is 440 or under is normal) then 2 weeks went by recheck them and went back up to 478. Kinda disappointing thought 500mg per day would continue to lower them. Does anyone else have issues of platelets going up and down . Starting to think stress makes them go up. It’s crazy platelets do what they want.

Yes!! My platelets were at 777 in the beginning. After four weekly phlebotomies and four weeks of 500 mg daily of HU, they dropped to 220? Stopped the HU for four weeks and my platelets jumped back to just over 600. Back on HU now 5days on 2 days off. After 7 doses my platelets dropped 220 points with no recent phlebotomies. Hematocrit jumped to 48 so I just had one last week. I’m seeing the platelets drop about 100 after a phlebotomy, so I’m waiting to see how this plays out. I was just diagnosed in January this year. Honestly, I’d rather do monthly phlebotomies than take the meds and do them bimonthly or every 6 weeks. I’m just 56 and have no other health issues. I’ve read it takes several months to get some sort of normalcy, if that’s a thing. I’m grateful I’m on a low dose but let’s see how this plays out at my next labs next week. Doing them every two weeks currently. KIT

Wow it seems HU really works good for you at a low dose. It seems to not work as well for me I have been taking this med for probably over 2-3 months I started with my platelets at 602 and they are at 478 as of Tuesdays blood work. I told doctor my platelets are not life threating enough to raise HU up because I don't want to deal with side effects of this med. Let me ask you this I take my Pill right after Supper full stomach around 6:30 pm. When do you take it ,and do you take it on full stomach or empty ?

First let me say that as long as my platelets are 600 or under my doctor says that’s fine Hematocrit at 45 or lower. I have taken them at night in the beginning with no food and now I switched to mornings (only because I was told I can drink alcohol moderately and enjoy an occasional glass of wine and didn’t want to take the pill at the same time) it did take about two weeks for my stomach to adjust but didn’t matter in my case with or without food.

Thank You for the info.

Hi Robert,
My hematologist gave me an information sheet on HU. It said to take half hour before or after eating with a full glass of water. Also, it is very important to drink minimum of 64 ounces of fluid daily to flush the toxic effect.

Since 450 or less is normal you were close to normal. From what I have read platelets can jump up and down by what is happening in your body.

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Eileen

Yes it says to drink a full glass of water with HU. The label on the prescription bottle says take with or without food? I guess it effects each of us differently. This medication works in our bone marrow. Also a lot of fluids is important not to get dehydrated. That can cause high BP which can cause all kinds of other issues. I’m curious why my doctor says 600 or lower platelets count is acceptable and you guys are being told less? Each lab has their own “norms” but most do say 450

Hola a todos, les cuento que hace 9 años que utilizo hidrixi.
Por suerte no tengo casi efectos secundarios. Tomo 2 comprimidos a diario y mis plaquetas oscilan entre 550 y 750..(me analizo cada dos o tres meses).