Hydroxyurea side effects lessen over time?

Posted by nypara66 @nypara66, Mar 17, 2023

Hello, I’m 56 and was recently diagnosed with PV, Jak2 positive. I was lucky to catch it at the beginning stages from an annual lab test. I started menopause last year and had just assumed the headaches and tingling were hormonal. My numbers were where they like after four weekly phlebotomies and put on hydroxyurea. I have labs every two weeks and believe I’m due for another phlebotomy this week(6 weeks after last) My question is if I will adjust to the meds after some time? Tingling in my tongue and tender gums? Using mouthwash now. Spots on skin also but dermatologist says they are not dangerous just cosmetic. My numbers jumped down quickly with the meds, he stopped them but they immediately jumped back up so he resumed them.

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Last time my platelets were just over 700. Now I'm on 1000mg of HU daily. Hopefully the med increase will help. It's never been suggested that I have a phlebotomy nor have I been told to take my HU a hour away from food. I have ET with JAK2. Maybe that's why?

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@eileen11108

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.

If you would like to see more discussions sign up on healthunlocked.com. It originates in the United Kingdom but people around the world participate.

Eileen

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Thank you Eileen for the information. I will sign up on that site also.

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It sounds like it is working for you. You test yourself? How does that work?

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@nypara66

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

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I first found out about my high platelet count during my annual Medicare checkup last fall; it was 1.2 million. Around the same time, I found that I have celiac disease and I am anemic. My oncologist put me on a daily baby aspirin and 500 mg daily of Hydrea. I have my blood tested weekly to monitor results. My platelet count (PC) dropped quickly (down to around 600k). Then she started me on iron tablets to address the anemia. My PC count went back up to almost 1 million, so she said stop taking the iron. My oncologist has tried to manage the PC by adjusting how many days per week I take Hydrea. Since then (about 3-4 months ago) my PC has ranged from the upper 400k's to the upper 900k's. I had two surgeries during this time, which did cause some fluctuations in platelet, white and red blood cell counts (for one week only and then back to pre-surgery levels). This approach seemed like it was working, and we got to the point where one 500 mg Hydrea 6 days a week was showing a slow decline in PC (still above 500k until two weeks ago when it started climbing again. So now I'm back to taking Hydrea 7 days a week. The saga continues. I see my oncologist next week to see what happens next.

I have never suffered any side effects from the Hydrea, and after seeing the range of reactions that people are having, I consider myself quite lucky. Thankfully I have no other obvious symptoms due to PC at this time.

I am on otherwise healthy 68 year old guy that still plays hockey 3 days a week (when I'm not recovering from surgery). Finally, are you having a phlebotomy to reduce your PC, and it works? My doctor has not mentioned this as an option. Forgive me but that sounds so 17th century.

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@springer44

It sounds like it is working for you. You test yourself? How does that work?

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I get my labs done every two weeks.

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@springer44

I first found out about my high platelet count during my annual Medicare checkup last fall; it was 1.2 million. Around the same time, I found that I have celiac disease and I am anemic. My oncologist put me on a daily baby aspirin and 500 mg daily of Hydrea. I have my blood tested weekly to monitor results. My platelet count (PC) dropped quickly (down to around 600k). Then she started me on iron tablets to address the anemia. My PC count went back up to almost 1 million, so she said stop taking the iron. My oncologist has tried to manage the PC by adjusting how many days per week I take Hydrea. Since then (about 3-4 months ago) my PC has ranged from the upper 400k's to the upper 900k's. I had two surgeries during this time, which did cause some fluctuations in platelet, white and red blood cell counts (for one week only and then back to pre-surgery levels). This approach seemed like it was working, and we got to the point where one 500 mg Hydrea 6 days a week was showing a slow decline in PC (still above 500k until two weeks ago when it started climbing again. So now I'm back to taking Hydrea 7 days a week. The saga continues. I see my oncologist next week to see what happens next.

I have never suffered any side effects from the Hydrea, and after seeing the range of reactions that people are having, I consider myself quite lucky. Thankfully I have no other obvious symptoms due to PC at this time.

I am on otherwise healthy 68 year old guy that still plays hockey 3 days a week (when I'm not recovering from surgery). Finally, are you having a phlebotomy to reduce your PC, and it works? My doctor has not mentioned this as an option. Forgive me but that sounds so 17th century.

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I’m diagnosed with PV Polycythemia Vera. The phlebotomies are to lower my hematocrit but I’ve noticed it lowers the platelets as well. The HU is for the high platelets and slightly elevated red cells from the PV. I’d like the option to monitor the platelets with just the phlebotomies and see if my platelets stay acceptable but it’s too soon i guess. I was just diagnosed about 10 weeks ago. I’m a 56 yr old female with no other ailments. From what I’ve read, it takes some months to figure dosage/phlebotomies to get the PV stable

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