Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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Profile picture for wlm7615 @wlm7615

I was on HU for about nine years, with good control of platelets, until a painful ulcer suddenly appeared on my ankle. The ulcer would not heal until the HU was stopped. I switched to Besrimi about six months ago (150mcg 2x/mo), and so far it is controlling the platelet count very well, with no side effects.

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@wlm7615 I read that Besrimi is very expensive. Is that true?

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Profile picture for jp2000 @jp2000

@wlm7615 I took HU for 10 years and had the same thing happen 6 months ago when my Doc bumped me to 2000mg a day. I had been tolerating 1500mg but my count went up which caused her increase the dosage. I’m now going to give anagrelide a try.

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@jp2000 I am getting ready to start Anagrelide today. I have been on hydroxy urea for about five years. My oncologist is changing my meds because my red blood cells are making me anemic and it is caused by the hydroxyurea. My doctor said that Anagrelide Side effects are headaches and high heart rate. I would love to know if you have experience any of this on this new med. Would love to hear from you. Thanks.

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Profile picture for appraiser1946 @appraiser1946

@jp2000 I am getting ready to start Anagrelide today. I have been on hydroxy urea for about five years. My oncologist is changing my meds because my red blood cells are making me anemic and it is caused by the hydroxyurea. My doctor said that Anagrelide Side effects are headaches and high heart rate. I would love to know if you have experience any of this on this new med. Would love to hear from you. Thanks.

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@appraiser1946 I should be getting my meds tomorrow so I will let you know my side effects. It’s interesting. I had below normal red blood counts for years. Even my white blood count was below normal even during the pandemic. I never got so much as a cold much less Covid. My doctor was primarily worried about ulcers. I experienced fatigue while taking HU. I thought it was primarily due to the HU but my GP identified a vitamin D3 deficiency. I started taking D3 supplements and the fatigue lessened noticeably.

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My platelets were out of range( over 450) for ten years. When they reached 900s, my oncologist said I should start Hydrea. Within 4 months my platelets were in 480.
I’ve had some side effects;
fatigue, nausea, metal taste, mild hair thinning, vision, and chills.
My doctor just reduced my dosage to 500 5 days on, 2 off.
I get blood work this week.🤞
We agree a few side effects are better than a stroke or heart attack. I just turned 71 and have no weight or health issues.

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I’ve been on hydroxy500 since February 2025. The last couple months, my eyes have been bothering me a great deal. My eyes are weak and burn all the time. I had my eyes checked about two months ago. I was told that my eyes have dry spots throughout. I was told to put eye drops in my eyes every two hours that has not helped. Has anyone else had this problem with their eyes?

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Profile picture for betty82 @betty82

I’ve been on hydroxy500 since February 2025. The last couple months, my eyes have been bothering me a great deal. My eyes are weak and burn all the time. I had my eyes checked about two months ago. I was told that my eyes have dry spots throughout. I was told to put eye drops in my eyes every two hours that has not helped. Has anyone else had this problem with their eyes?

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Hi @betty82. While you’re waiting for other members who take hydroxyurea to comment on dry eyes, I thought I’d pop in to Welcome you to Mayo Connect.

I don’t have any experience with hydroxyurea but I do have dry eyes due to a medical condtion that I have. Two things I was recommended by my ophthalmologist at Mayo was to use warm compresses on my eyes for at least 15 minutes daily. Warm washcloth or there are products such as Bruder Moist Heat Compresses (there are other brands too) which you can put in the microwave to heat. They stay warmer for the entire time. The compresses, besides feeling soothing, can help loosen up constricted or clogged oil glands.

The 2nd product, which is what I use religiously and has worked amazingly well is Systane Night time Ointment for severe dry eyes. Not the gel…the ointment. It comes in a very small tube. To apply, pull out your lower lid a little and squeeze a small amount, about 1/4 in your lower eye lid. Then blink several times. Put this in right before bed because it will make your eyes blurry. But it lasts all night long. (Blinking rapidly in the morning clears your eyes). After using it consistently nightly, I no longer need any drops during the day!
Also, it tends to be a little messy on the pillowcase so make sure you use an old one or put a towel over your pillow.
Have you tried this Systane product?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @betty82. While you’re waiting for other members who take hydroxyurea to comment on dry eyes, I thought I’d pop in to Welcome you to Mayo Connect.

I don’t have any experience with hydroxyurea but I do have dry eyes due to a medical condtion that I have. Two things I was recommended by my ophthalmologist at Mayo was to use warm compresses on my eyes for at least 15 minutes daily. Warm washcloth or there are products such as Bruder Moist Heat Compresses (there are other brands too) which you can put in the microwave to heat. They stay warmer for the entire time. The compresses, besides feeling soothing, can help loosen up constricted or clogged oil glands.

The 2nd product, which is what I use religiously and has worked amazingly well is Systane Night time Ointment for severe dry eyes. Not the gel…the ointment. It comes in a very small tube. To apply, pull out your lower lid a little and squeeze a small amount, about 1/4 in your lower eye lid. Then blink several times. Put this in right before bed because it will make your eyes blurry. But it lasts all night long. (Blinking rapidly in the morning clears your eyes). After using it consistently nightly, I no longer need any drops during the day!
Also, it tends to be a little messy on the pillowcase so make sure you use an old one or put a towel over your pillow.
Have you tried this Systane product?

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@loribmt thank you very much for your reply. I will certainly get the ointment you suggested, for nighttime, so thankful for your advice.

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Profile picture for betty82 @betty82

@loribmt thank you very much for your reply. I will certainly get the ointment you suggested, for nighttime, so thankful for your advice.

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@betty82 I’ve recommended it to so many of my friends who have dry eyes and they love it too. Hah, I promise I don’t get a kickback from the company. 😂. But I’d tried so many drops which didn’t work.
My next option was getting autologous serum eye drops are made from my blood. But at a suggestion from my ophthalmologist I gave this a try. The key is using it nightly. When I used to apply it haphazardly, it wasn’t as effective. Nightly routine was the game changer.
Good luck! Let me know how the Systane ointment works for you, ok?

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Profile picture for Lori, Volunteer Mentor @loribmt

@betty82 I’ve recommended it to so many of my friends who have dry eyes and they love it too. Hah, I promise I don’t get a kickback from the company. 😂. But I’d tried so many drops which didn’t work.
My next option was getting autologous serum eye drops are made from my blood. But at a suggestion from my ophthalmologist I gave this a try. The key is using it nightly. When I used to apply it haphazardly, it wasn’t as effective. Nightly routine was the game changer.
Good luck! Let me know how the Systane ointment works for you, ok?

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@loribmt Thank you! I just ordered systane ointment.I will let you know…

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Profile picture for appraiser1946 @appraiser1946

@jp2000 I am getting ready to start Anagrelide today. I have been on hydroxy urea for about five years. My oncologist is changing my meds because my red blood cells are making me anemic and it is caused by the hydroxyurea. My doctor said that Anagrelide Side effects are headaches and high heart rate. I would love to know if you have experience any of this on this new med. Would love to hear from you. Thanks.

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@appraiser1946
I have been on Anagrelide for over 5 years now after being on HU for 18 years and developed a very bad case of skin cancer.
I have no problems with it at all. It is best used by those who have no heart issues. I experienced some palpitations in the beginning
But those subsided after my body adjusted. My hair is now thicker and my energy level is just fine. I have less side affects with this drug than HU. I also take a baby aspirin daily. Hope that helps you 😊

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