How long before side effects from Hydrea start?

Posted by arecchie @arecchie, Oct 21 2:52pm

I just finished week two of Hydrea. How long before the side effects, if any, start? I'm trying to gauge when or if I'm getting the side effects.

Also, does anyone know if you lose some hair (thinning out) or a lot of hair? I know it's different for everyone, but a timeline and any help you can share would be appreciated.

Thanks so much.

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@arecchie

My doctor told me that 600 for platelets is far too high. The range at the high end of the acceptable range is around 450 - tops.

Are you using Reversatrol?

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Hello, my doctor said up to 600 is safe and acceptable for my platelet count. I’m not sure if you Have other health issues that may contribute to the max number acceptable but my oncologist is board certified and I trust him. Age may be a factor as well. I’m 58. I’m sure there is a reason your doctor said this. Yes the range is 150-450 but that’s for healthy people not us 🙃

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Questions about acceptable platelet counts come up often: Might be helpful to remember that clot risk factors for any count that typically runs >450 depends on age, previous embolism, and mutation type. Any count >1,000 may trigger vonWillebrand Syndrome, which can result in bleeding episodes and must be treated with platelet reduction meds or, in an emergency, plateletpheresis. Do ask yr doc about your specific risks because they vary from patient to patient.

I have been on hydroxyurea for 7 years no probs. Now noticing increased erythema--hands, feet, face w/ rash--and more severe itching. GP ordered tests and ruled out autoimmune diseases like lupus. ET? HU side effects? Something unrelated? I see the hemo next week, so hope to know more and will report back.

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@nypara66

Hello, my doctor said up to 600 is safe and acceptable for my platelet count. I’m not sure if you Have other health issues that may contribute to the max number acceptable but my oncologist is board certified and I trust him. Age may be a factor as well. I’m 58. I’m sure there is a reason your doctor said this. Yes the range is 150-450 but that’s for healthy people not us 🙃

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Well, I guess I'm healthier than I thought, according to your analysis!

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@arecchie

Well, I guess I'm healthier than I thought, according to your analysis!

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I hope so! Please ask your doctor as everyone has different circumstances. Hang in there!

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Over two years I had no hair loss or other noticeable symptoms. Clearly I was fortunate.
I took the med MWF only as it was driving platelets below acceptable levels. U have to find sweet spots.
Good luck on your journey.

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I’m 72, on 500mh/day for 1.5 years. I’ve had some intermittent inside elbow itching for which I use cream and my shins “feeling” like sunburned—goes away in 15 mins. I’ve noticed both are gone now that it’s cooler out and I’m not in the pool or sun as much. Those are the only side effects I’ve noticed. My hair is very thick—no changes. Good luck on your journey.

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I was taking it 6 months before any side effects. Very dry skin, sores in my mouth and a swollen cornea.

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@preacherswife1977

I was taking it 6 months before any side effects. Very dry skin, sores in my mouth and a swollen cornea.

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I too have dry skin.. maybe a little dryer w/Hydroxyrea. I just got a cold sore on my lip—-haven’t had these in decades!…maybe related, maybe not. As Aunt Betty Davis said, “ Getting old isn’t for sussies!” (She’s not really my aunt but she is a Davis—so there’s that 🙂

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I had side effects within a few days. Lightheaded wonky feeling, felt off balance.
That part seemed to level out in about a month and a half, but then developed mouth sores, fatigue, and very, very itchy – – the Cancer Clinic suggested I take an antihistamine to counteract the symptoms. – – That helps.

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@dherrman2

I have been on 1000 mg for 15 years. I may have some hair thinning, but that is not terrible. I have PV. I do get my phlebotomies and my platelets are around 600. I am now on Methotrexate for my RA. Waiting to see if I have any side affects.

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I've also been in 1000mg, for ten years. Just turned 70, quite active, playing doubles tennis twice a week.
I've had no symptoms so far (Essential Thrombocytosis), but now my oncologist is reducing my dosage to 500 mg, and wanting to try to get to zero.
Obviously very concerned with the stroke risk, but don't know at what platelet count the risk trump's the risk from hydroxyuria.

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