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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 lynnebgraham
lynnebgraham | @lynnebgraham | Jan 6 4:52pm
In reply to @nancyra "@appraiser1946 I have been on Anagrelide for over 5 years now after being on HU for..." + (show)
Profile picture for nancyra @nancyra

@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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@nancyra Hi, I am currently on HU, hoping when I see my new haematologist tomorrow, they put me back on Anagrelide. Was on Anagrelide for over 16 years with no problems. On HU for 1 year, my hair has thinned out badly and i am just so tired all of the time. While on Anagrelide I did not have any side affects. Fingers crossed.

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mlmk0601 | @mlmk0601 | Jan 7 8:24am
In reply to @loribmt "Hi @betty82. While you’re waiting for other members who take hydroxyurea to comment on dry eyes,..." + (show)
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 for these suggestions. I too suffer from dry eyes even before taking HU. I will try the Systane and ointment.

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appraiser1946 | @appraiser1946 | Jan 7 8:57am
In reply to @nancyra "@appraiser1946 I have been on Anagrelide for over 5 years now after being on HU for..." + (show)
Profile picture for nancyra @nancyra

@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 😊

Jump to this post

@nancyra Thanks for the information about anagrelide. The doctor has taken me off of hydroxyurea because of the red blood count and it causing anemia. Always a little afraid of a new medication. I have had some heart palpitations already. I am hoping and praying the stops. Thanks again for your positive comments.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 7 9:05am
In reply to @mlmk0601 "@loribmt Thank you for these suggestions. I too suffer from dry eyes even before taking HU...." + (show)
Profile picture for mlmk0601 @mlmk0601

@loribmt Thank you for these suggestions. I too suffer from dry eyes even before taking HU. I will try the Systane and ointment.

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@mlmk0601 I think so many of us suffer from dry eyes either from underlying conditions, medications, too much screen time and ‘hate to admit this’, but age, ☺️ Eye drops didn’t help me except for the moment or two after applying. So this Systane Nighttime lubricant for extreme dry eyes, made all the difference for me. My ophthalmologist recommended it for me. It’s over the counter and has no preservatives. If you try it, let me know how it works for you.

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nancyra | @nancyra | Jan 7 10:19am
In reply to @appraiser1946 "@nancyra Thanks for the information about anagrelide. The doctor has taken me off of hydroxyurea because..." + (show)
Profile picture for appraiser1946 @appraiser1946

@nancyra Thanks for the information about anagrelide. The doctor has taken me off of hydroxyurea because of the red blood count and it causing anemia. Always a little afraid of a new medication. I have had some heart palpitations already. I am hoping and praying the stops. Thanks again for your positive comments.

Jump to this post

@appraiser1946
My hem prescribed me some low dose diazepam for the first month which helped greatly

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jp2000 | @jp2000 | Jan 7 12:14pm
In reply to @nancyra "@appraiser1946 I have been on Anagrelide for over 5 years now after being on HU for..." + (show)
Profile picture for nancyra @nancyra

@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 😊

Jump to this post

@nancyra This is good to know. Hopefully I’ll have a similar experience. Thanks.

REPLY
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tree7737 | @tree7737 | 6 days ago

I had high platelets for over four years before a new GP suggested that I see a specialist. I was surprised when the specialist was at a cancer center, but a bone marrow biopsy confirmed that it was connected to a JAK 2 origin.
In the 6 months I have been on Hydroxurea my platelet count has dropped from a high of 566 to 342 and I have not noticed and negative side effects other that occasional fatigue near the end of a 4 mile hike, but I am 82 so maybe it’s concomitant with growing older. Hard to know.
I am also on low dose aspirin.

Good luck with your treatments!

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2 replies
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eileen11108 | @eileen11108 | 6 days ago
In reply to @tree7737 "I had high platelets for over four years before a new GP suggested that I see..." + (show)
Profile picture for tree7737 @tree7737

I had high platelets for over four years before a new GP suggested that I see a specialist. I was surprised when the specialist was at a cancer center, but a bone marrow biopsy confirmed that it was connected to a JAK 2 origin.
In the 6 months I have been on Hydroxurea my platelet count has dropped from a high of 566 to 342 and I have not noticed and negative side effects other that occasional fatigue near the end of a 4 mile hike, but I am 82 so maybe it’s concomitant with growing older. Hard to know.
I am also on low dose aspirin.

Good luck with your treatments!

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@tree7737
I am so impressed that you can do a four mile hike. That is great at 82!
Eileen

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1 reply
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tree7737 | @tree7737 | 6 days ago
In reply to @eileen11108 "@tree7737 I am so impressed that you can do a four mile hike. That is great..." + (show)
Profile picture for eileen11108 @eileen11108

@tree7737
I am so impressed that you can do a four mile hike. That is great at 82!
Eileen

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Thank you. I love hiking! I do feel grateful to be able to!

Sent from the all new AOL app for iOS

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kik1 | @kik1 | 5 days ago
In reply to @lynnebgraham "@nancyra Hi, I am currently on HU, hoping when I see my new haematologist tomorrow, they..." + (show)
Profile picture for lynnebgraham @lynnebgraham

@nancyra Hi, I am currently on HU, hoping when I see my new haematologist tomorrow, they put me back on Anagrelide. Was on Anagrelide for over 16 years with no problems. On HU for 1 year, my hair has thinned out badly and i am just so tired all of the time. While on Anagrelide I did not have any side affects. Fingers crossed.

Jump to this post

@lynnebgraham

Did you not worry about heart issues?

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