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Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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Profile picture for scienceteacher
scienceteacher | @scienceteacher | Feb 8 11:23am
In reply to @nande "Hi, This group has been very helpful.💕💕 I’ve been on 500 Hydrea for 9 months. My..." + (show)
Profile picture for nande @nande

Hi,
This group has been very helpful.💕💕
I’ve been on 500 Hydrea for 9 months. My doctor cut back from 7 days to 5 days because of the fatigue. The tingling in my fingers and toes is better. My platelets started at 970, then went down to 480 and now are back up to 565. My doctor said it takes at least a year to get the right dosage.
Does anyone have trouble with your nails splitting and peeling? I’m 71 and could be age. I’ve tried everything!
I also get a sharp twinge of pain in my head once in a while. I had this with Covid a couple of years ago. I’m just wondering if it’s ET or the Hydrea?

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@nande I am also 71 and have had trouble with splitting and peeling nails before but never like this. I am trying some treatments but so far I just have to keep them short and try to minimize the amount of time my hands spend in water or drying agents like detergents.

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2 replies
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darginskylisa | @darginskylisa | Feb 8 3:32pm
In reply to @amlqueen "@janemc Thank you for everything. Have a Blessed day. It gives me hope I’m not alone." + (show)
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@janemc Thank you for everything. Have a Blessed day. It gives me hope I’m not alone.

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@amlqueen there is always hope

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janemc | @janemc | Feb 9 6:00am
In reply to @nande "Hi, This group has been very helpful.💕💕 I’ve been on 500 Hydrea for 9 months. My..." + (show)
Profile picture for nande @nande

Hi,
This group has been very helpful.💕💕
I’ve been on 500 Hydrea for 9 months. My doctor cut back from 7 days to 5 days because of the fatigue. The tingling in my fingers and toes is better. My platelets started at 970, then went down to 480 and now are back up to 565. My doctor said it takes at least a year to get the right dosage.
Does anyone have trouble with your nails splitting and peeling? I’m 71 and could be age. I’ve tried everything!
I also get a sharp twinge of pain in my head once in a while. I had this with Covid a couple of years ago. I’m just wondering if it’s ET or the Hydrea?

Jump to this post

@nande

Hello, nande! Your count may not yet be perfect, but HOORAY! It's come down wonderfully from where you started.

Your doctor is right. While some people respond very quickly to hydrea (HU), others don't. Give it time.

My two cents is that your headaches are from ET. Our platelet-heavy blood can't easily pass through the tiny veins in our heads. The result is nasty headaches.

Mine strike in the left temple -- how about you? Now that I've been on HU for two years, though, I have headaches only occasionally.

As for fragile nails, that may be HU. The advice to keep nails short is excellent. I also feel HU dries out my skin. So get yourself some really lovely lotion!

Keep up the good work!

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nohrt4me (Jean) | @nohrt4me | Feb 9 8:12am

Use rubber gloves for housework and make sure you get your nails when you use hand lotion. It helps. I never used lotions until I went on HU, but now have dry, sensitive everything and need hair conditioner and skin moisturizers/sun screens. Vanicream makes a line of unscented products, which work well because any fragrance sets off my asthma. My dermatologist says CeraVe and Aveeno products are also good. Those are widely available at the drug store.

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1 reply
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appraiser1946 | @appraiser1946 | Feb 9 8:29am
In reply to @nande "Hi, This group has been very helpful.💕💕 I’ve been on 500 Hydrea for 9 months. My..." + (show)
Profile picture for nande @nande

Hi,
This group has been very helpful.💕💕
I’ve been on 500 Hydrea for 9 months. My doctor cut back from 7 days to 5 days because of the fatigue. The tingling in my fingers and toes is better. My platelets started at 970, then went down to 480 and now are back up to 565. My doctor said it takes at least a year to get the right dosage.
Does anyone have trouble with your nails splitting and peeling? I’m 71 and could be age. I’ve tried everything!
I also get a sharp twinge of pain in my head once in a while. I had this with Covid a couple of years ago. I’m just wondering if it’s ET or the Hydrea?

Jump to this post

@nande Yes, I do have nails that split and also have ridges on them. I feel that the Hu has caused this. My oncologist has taken me off of the hydroxyurea and Put me on anagrelide. I have only been on the new medicine a couple weeks, but I feel like it has changed my nails, and also helped me with my red blood count. Good luck with your journey.

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1 reply
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lynnevb | @lynnevb | Feb 9 11:46am
In reply to @gohde13 "Hi @nande I've been on hydrea 500/day 7 days since August 2025. Keeping the platlets between..." + (show)
Profile picture for gohde13 @gohde13

Hi @nande
I've been on hydrea 500/day 7 days since August 2025. Keeping the platlets between 340 to 415. But my biggest side effect - the nails also. Thinning, lifting a bit and splitting or peeling near ends. Otherwise knock wood that's mostly what I've noticed effectwise so far. I'm 66 - but since the nail thing just kind of came on this fall I attribute the hydrea since they weren't like this before.

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@gohde13
I have had ET since 2002 and on Hydrea for 11 years. My nails also were getting worse and worse. I have found Vital Proteins Professional Bioactive Collagen Complex a game changer, it is a powder that you mix with water and drink. I also like to use a nail strengthener called Londontown The Concealer Collection KUR Perfecting nail vail.

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1 reply
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nande | @nande | Feb 9 5:18pm
In reply to @scienceteacher "@nande I am also 71 and have had trouble with splitting and peeling nails before but..." + (show)
Profile picture for scienceteacher @scienceteacher

@nande I am also 71 and have had trouble with splitting and peeling nails before but never like this. I am trying some treatments but so far I just have to keep them short and try to minimize the amount of time my hands spend in water or drying agents like detergents.

Jump to this post

@scienceteacher
Thank you. It helps to know I’m not alone.💕

REPLY
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nande | @nande | Feb 9 5:20pm
In reply to @appraiser1946 "@nande Yes, I do have nails that split and also have ridges on them. I feel..." + (show)
Profile picture for appraiser1946 @appraiser1946

@nande Yes, I do have nails that split and also have ridges on them. I feel that the Hu has caused this. My oncologist has taken me off of the hydroxyurea and Put me on anagrelide. I have only been on the new medicine a couple weeks, but I feel like it has changed my nails, and also helped me with my red blood count. Good luck with your journey.

Jump to this post

@appraiser1946
Thank you. My doctor says I need to try Hydrea for a year. I’ll ask about the other medication.💕

REPLY
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nande | @nande | Feb 9 5:25pm
In reply to @nohrt4me "Use rubber gloves for housework and make sure you get your nails when you use hand..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

Use rubber gloves for housework and make sure you get your nails when you use hand lotion. It helps. I never used lotions until I went on HU, but now have dry, sensitive everything and need hair conditioner and skin moisturizers/sun screens. Vanicream makes a line of unscented products, which work well because any fragrance sets off my asthma. My dermatologist says CeraVe and Aveeno products are also good. Those are widely available at the drug store.

Jump to this post

@nohrt4me Thank you. I wear rubber gloves and use lotions regularly. My doctor recommended CeraVe. I use a lotions and hand sanitizer because I worry at a hospital.
I have sensitive skin and have used fragrance free since my teens.
I’ll check out the Vanicream.💕

REPLY
1 reply
Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | Feb 10 7:32am
In reply to @nande "@nohrt4me Thank you. I wear rubber gloves and use lotions regularly. My doctor recommended CeraVe. I..." + (show)
Profile picture for nande @nande

@nohrt4me Thank you. I wear rubber gloves and use lotions regularly. My doctor recommended CeraVe. I use a lotions and hand sanitizer because I worry at a hospital.
I have sensitive skin and have used fragrance free since my teens.
I’ll check out the Vanicream.💕

Jump to this post

@nande I use CeraVe in winter as my "heavy hitter" when the furnace dries the air out. I also have a steam humidifier. Working at a hospital or anyplace you have to wash your hands and use sanitizer frequently is hard on skin and nails.

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