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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68 male, diagnosed just under 2 years ago with PV.. I can’t comment on menopause but have been on hydroxy urea since April 2021.. You didn’t mention how many pills you are taking.. In my case, I started at 7000 Mg per week and raised to 8500 mg per week where I am currently… I go for monthly blood tests and numbers have been good.. Your body will let you know over time how the HU may or may not impact you… Some people can’t tolerate HU at all and yet others have little or no side effects … So far, I fall into the second category… Currently, I can’t definitively point to any side effects from the HU.. Will that change over time?? I have no
clue.. Despite feeling really good, I always hold my breath for the monthly lab results.. Best to you..

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@dale1k

68 male, diagnosed just under 2 years ago with PV.. I can’t comment on menopause but have been on hydroxy urea since April 2021.. You didn’t mention how many pills you are taking.. In my case, I started at 7000 Mg per week and raised to 8500 mg per week where I am currently… I go for monthly blood tests and numbers have been good.. Your body will let you know over time how the HU may or may not impact you… Some people can’t tolerate HU at all and yet others have little or no side effects … So far, I fall into the second category… Currently, I can’t definitively point to any side effects from the HU.. Will that change over time?? I have no
clue.. Despite feeling really good, I always hold my breath for the monthly lab results.. Best to you..

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I began taking 500 daily, after my first four weekly phlebotomies and taking the HU my platelets dropped from 777 to just over 200. He stopped the HU. Within 3 weeks platelets jumped back over 600 w/o phlebotomy. Put me back on HU a week ago. 5 days on, two off. Labs are due this week again. From what I’m reading, that’s a low dose. If monthly phlebotomies get me the right numbers w/out the meds, I’d prefer that, but it’s too soon in the game and he wants me on the meds.

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I've been on HU since April 2021. The first year on HU I had gut side effects. Finally after a year, the gut side effects subsided. I still have bone pain in shins and toes at night, but Dr said not a symptom of ET or HU ??? I had the pain before HU and I still have pain, but the pain seemed to start when my platelet count started rising over a 3 year period before I was diagnosed. I also have numbness in my hands when I wake in the morning.

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@1995victoria

I've been on HU since April 2021. The first year on HU I had gut side effects. Finally after a year, the gut side effects subsided. I still have bone pain in shins and toes at night, but Dr said not a symptom of ET or HU ??? I had the pain before HU and I still have pain, but the pain seemed to start when my platelet count started rising over a 3 year period before I was diagnosed. I also have numbness in my hands when I wake in the morning.

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I have numbness in my hands as well! It’s all so new so I’m trying to be patient but also looking for answers. I’m glad I caught it within a year being my labs were fine 12 months before. Crazy how sudden this PV comes….

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I was put on hydroxyurea when first diagnosed with JAK2/PV about a year ago and side-effects were nausea, mostly, and some headaches. 'Progressed' to Jakafi and that took those side-effects away but I continue to have tightening of calves and some tingling in my feet at times....
As nypara66 said "crazy how sudden this PV comes on....

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@nypara66

I began taking 500 daily, after my first four weekly phlebotomies and taking the HU my platelets dropped from 777 to just over 200. He stopped the HU. Within 3 weeks platelets jumped back over 600 w/o phlebotomy. Put me back on HU a week ago. 5 days on, two off. Labs are due this week again. From what I’m reading, that’s a low dose. If monthly phlebotomies get me the right numbers w/out the meds, I’d prefer that, but it’s too soon in the game and he wants me on the meds.

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Hi I’m 62 male , was diagnosed 3 months ago with ET and JAK2 positive my platelets were only slightly high the average was 575-600 but she put me on HU 500mg per day it’s been 4 weeks and I’m only down to 430. I take a lot of vitamins and supplements I exercise and run 3 miles a day wondering if this is causing the slow reduction. Do you take and vitamins or supplements?

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@robert3861

Hi I’m 62 male , was diagnosed 3 months ago with ET and JAK2 positive my platelets were only slightly high the average was 575-600 but she put me on HU 500mg per day it’s been 4 weeks and I’m only down to 430. I take a lot of vitamins and supplements I exercise and run 3 miles a day wondering if this is causing the slow reduction. Do you take and vitamins or supplements?

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Actually none. I have had no prior health issues or meds what so ever until now. BP, cholesterol and sugar always good. I do exercise and eat pretty healthy but nothing extreme. So I’m on 81 mg aspirin and the HU 500 mg 5X a week. Waiting to see it that’s enough? Now at 56 being hit with this was a shocker!

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@nypara66

Actually none. I have had no prior health issues or meds what so ever until now. BP, cholesterol and sugar always good. I do exercise and eat pretty healthy but nothing extreme. So I’m on 81 mg aspirin and the HU 500 mg 5X a week. Waiting to see it that’s enough? Now at 56 being hit with this was a shocker!

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Most of us seem to have been blind-sided with a PV diagnosis… I’m willing to bet that most(myself included) never heard of it.. In my case, something didn’t feel quite right… Slight dizziness that I thought was a problem with the brain, not some rare blood disease that required a cancer medication and phlebotomies… HU along with baby aspirin and phlebotomies when necessary seems to be the initial standard of care.. I hope I don’t have to progress to the next treatment phase for a long time… For now, I stay active… bike, swim, lots of walking, etc and that seems to help…

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@robert3861

Hi I’m 62 male , was diagnosed 3 months ago with ET and JAK2 positive my platelets were only slightly high the average was 575-600 but she put me on HU 500mg per day it’s been 4 weeks and I’m only down to 430. I take a lot of vitamins and supplements I exercise and run 3 miles a day wondering if this is causing the slow reduction. Do you take and vitamins or supplements?

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I am a 61-year-old female. I exercise regularly. My oncologist/dermatologist took me off all supplements except baby aspirin, vitamin D, fiber, and fish oil. I take 1000mg of hydroxyurea daily. My platelets bounce around, but we watch all the counts over time rather than get alarmed by a single blood test (every six weeks right now).

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Los suplementos interfieren con la HU?, Yo tengo 40 años y me interesaría obtener experiencias de otros al respecto. Gracias

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