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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robert3861 | @robert3861 | Mar 21, 2023

I'm not sure if they do interfere with HU but my oncologist did not seem to be concerned about what I was taking. I have cut back on supplements but she told me to keep taking Resveratrol that it was good for your heart and blood. So I take that , baby aspirin, Ginkgo, multi vitamin and fish oil. I take my 500mg HU after I eat supper. I'm still getting Blood work every 2 weeks though right now until she see's how low my platelets will go on this weekly dose. last week they were 430 which is normal finally.

eileen11108 | @eileen11108 | Mar 22, 2023

In reply to @robert3861 "Hi I’m 62 male , was diagnosed 3 months ago with ET and JAK2 positive my..." + (show)

Hi Robert,

Be patient with HU. I am 78 and my hematologist informs me that my goal for platelets is 450 or lower. So you are at my goal for ET JAK2. Remember also that platelets can jump around at times with whatever is happening in your body. It is very fortunate you are not having side effects and I would personally not want to increase the dose to hurry things along,

Best wishes, Eileen

robert3861 | @robert3861 | Mar 22, 2023

Thanks Eileen,
I do not want to increase the dose that is for sure and yes I'm finally being patient with HU and I have no side effects. The first month I had to take it was scary because of what I read about HU but I don't think at low doses It will cause to many side effects. I think in the beginning my thoughts about it were the biggest issue. Now its all good. Thanks again

albertedward | @albertedward | Mar 22, 2023

Hi after taking hydroxyurea for about 4 months .my hermrcret has come down .I take 1000 per day.But my body aches alot at night and hard to sleep.A little less pain during the day.Does any body know if it is pv causing all the pain in the joints and bones or is it hydroxyurea. Thank you and hope you are getting better.

nypara66 | @nypara66 | Mar 23, 2023

Hello, I’m taking it for about two months now 500mg daily. I find that it lowers my platelets substantially, but my hematocrit usually goes down with the phlebotomies. I did read that HU can cause joint pain but also that it can take time for your body to adjust to the meds. Not sure how long that is but I would talk to your doctor. I have the tingling on my tongue, sensitive gums and some small brown spots on my skin. Dermatologist said they are cosmetic and not dangerous so I will keep taking it for now. There is only one other drug for PV if this is not tolerated, and it has more side effects and is much more expensive. Speak with your doctor and feel better.

Pumpkin1 | @pumpkin1 | Mar 23, 2023

Hi, I have ET JAK2, but am not taking HU due to my age and other health reasons. My platelet count has been in the mid 500s since diagnosis 1 year ago. For last 3 yrs. or so, I have experienced night time leg/bone pain which interferes greatly with my sleep. I am wondering if anyone else, who has ET but is NOT taking HU, has experienced this night-time pain? My docs say they don’t think it is related to ET, yet they cannot determine the cause of the pain. Any input you have will be greatly appreciated! I find this site very informative.

1995victoria | @1995victoria | Mar 24, 2023

In reply to @nypara66 "Hello, I’m taking it for about two months now 500mg daily. I find that it lowers..." + (show)

I had bone pain 3 years before I was officially diagnosed. My platelets kept slowly rising. Still have bone pain in shins and toes,my joints so far are ok. I've been on HU for 2+ years. Most of side effects have subsided, took about a year for my gut to get use to the HU

albertedward | @albertedward | Mar 25, 2023

In reply to @1995victoria "I had bone pain 3 years before I was officially diagnosed. My platelets kept slowly rising...." + (show)

Thanks for the info
I will keep taking hu and see how it goes
When I look back I believe I may have had pv for maybe 10 years and never new it until the blood clots started showing up..We all are in the same boat so keep well and Thank you

jjdownes01 | @jjdownes01 | Mar 29, 2023

I’m 78, diagnosed in 2021 with pv. On hydroxyurea 1000mg and hematocrit stays at 45. Itching was awful after bathing and recently has abated. Hope that continues. JJD

nypara66 | @nypara66 | Mar 29, 2023

In reply to @jjdownes01 "I’m 78, diagnosed in 2021 with pv. On hydroxyurea 1000mg and hematocrit stays at 45. Itching..." + (show)

Is that your daily dosage? I was wondering how often you need phlebotomies? I’m taking 500mg 5 days on 2 off because 7 days a week, along with phlebotomy, lowered my platelets too much. I was just diagnosed about 11 weeks ago and I’m thinking it takes a while to get on some sort of schedule/routine? I was lucky not to ever have the itching. Headaches and tingling were my two PV symptoms.

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