How fast do you start to feel hydroxyurea symptoms?

Posted by mlmk0601 @mlmk0601, Mar 16 1:14pm

Im 64 and have been diagnosed with ET since 2022. My platelets are now at 768,000. I Will be starting hydroxyurea 1 per every other day this coming Monday. I was wondering your experiences on how soon did you start to feel the onset of symptoms ? I’m so scared. I cried all the way home after picking up the prescription and then some.. not sure if I should have someone stay with me in the first week just in case I have a bad reaction.

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I am a 75 year old female and take 3 capsules a day. I have been on hydroxyurea just over a year. My only side effects have been fatigue and a weight gain. Don't be afraid of the HU. The possible problems if NOT on it with high platelets could be much more dangerous. The HU will help. If you have intolerable side effects from it your doctor will suggest another med. You may have no issues with it.

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Why are you looking for symptoms? I’m 75 and started Hydroxyurea 4 months ago with no side effects. Everyone is different but my oncologist said that most people don’t get side effects.

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I am 77 years old and have been on one 500 mg hydroxyurea capsule per day since December,, 2023, for my PV. I, like you, was very worried about side effects from the drug but, so far, I have had no real side effects except some minor issues with constipation which I address using s stool softener every other day. As others have said, your dr will put you on another drug if this one causes significant side effects.

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Please don't be scared! I know the idea of "chemotherapy" is daunting, but Hydroxyurea has been around for literally decades and is very effective for treating ET. You are on a very low dose so may not have any side effects at all. I have been on 500 mg twice a day since early November and my only side effect was headaches, which subsided when my dose was cut from 7 days a week to 4 days. And the headaches were brief - and worth putting up with for the benefit of the medication. My platelets dropped from 792,000 to 233,000 - well within normal limits.

Also, if you check the patient information sheet for any prescription, you will find similarly scary side effects for al most all of them - this is why they are available only by prescription, so that your doctor can monitor you for side effects. It's risk versus benefit - and many times the benefits outweigh the risk. I believe this is the case with Hydroxyurea. Hope this helps!

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I started hydroxyurea about the same time and had very little reaction. Over time, I experienced pain in my legs, not severe, and after six years, I did develop a skin cancer but day to day, I had no significant negative symptoms. Now at 78 I am more fatigued but I have added prolia to the mix and it has many of the same symptoms- leg pain, headaches and fatigue so it is hard to separate. There is no need to be anxious about hydroxyurea. If you have to have cancer, this is the mildest one you can have!🙃

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I took a week off work when I started HU (1 cap every evening) in case I got nauseated. No symptoms. Nothing. Went back to work after two days because I felt fine. Have felt fine for the last six years on it.

Your doc is starting you out on a very low dose, so odds are good you won't have any symptoms. My oncologist ordered an anti-emetic (compazine) just in case, but I never used it. If your doc didn't order it, ask the pharmacist to suggest an OTC anti-nausea med or have him request a Rx from your doc.

By all means have someone stay with you if you are scared and having someone to talk to will be help you relax. Watch some movies. Order a pizza. Celebrate taking care of yourself.

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@barbweav

I am 77 years old and have been on one 500 mg hydroxyurea capsule per day since December,, 2023, for my PV. I, like you, was very worried about side effects from the drug but, so far, I have had no real side effects except some minor issues with constipation which I address using s stool softener every other day. As others have said, your dr will put you on another drug if this one causes significant side effects.

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Thanks for mentioning constipation. I have that occasionally even though I drink lots of water. My husband suggested probiotics. I that was hooey on par with CBD oil and told him to stop looking up stuff on Google. But then the oncologist suggested it, and, by golly, it has helped!

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@mlmk0601
Hello, I wondered as I read your post, if there was something specific you have heard or read that concerns you so greatly about possible side effects of hydroxyurea? I hope that the experiences of those who have posted here are reassuring to you. Did you get a chance to talk to your physician about it?

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I hated taking my first HU capsule.

But after 5 months, now up to 8 capsules a week, I continue to be free of any side effects.

I love Patty's suggestion: Please share your fears because you shouldn't be alone with them.

All of us are here for you.

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my plts are 615, I have been afraid to start HD I am 70..will decide on next plt count . they are creeping up started at 4340 now 615

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