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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@arlene15

Question, does anyone with essential thrombocythemia JAK2 taking 500 mg of Hydroxurea twice a day have itchy skin? If so what helps? Drives me crazy in the evening and at bedtime.

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On another thread about itchy skin, our incredible monitor Lori suggested trying Dove for Sensitive Skin and Aveeno Oatmeal Body Wash. Cetaphil products were recommended too.

Hope you find something that works for you!

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@janemc

On another thread about itchy skin, our incredible monitor Lori suggested trying Dove for Sensitive Skin and Aveeno Oatmeal Body Wash. Cetaphil products were recommended too.

Hope you find something that works for you!

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Yes, Dove Sensitive for me. Aveeno is good. They also have a hydrocortisone cream, tho I try not to use that too much. I also use Vanicream products--shampoo, conditioner, and lotion. Fragrance free. They work well. I take Claratin every day + Benadryl at night sometimes. It's a constant battle though, I get it!

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@nohrt4me

Yes, Dove Sensitive for me. Aveeno is good. They also have a hydrocortisone cream, tho I try not to use that too much. I also use Vanicream products--shampoo, conditioner, and lotion. Fragrance free. They work well. I take Claratin every day + Benadryl at night sometimes. It's a constant battle though, I get it!

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At your suggestion, nohrt4me, about a month ago I started taking loratadine (generic Claritin) every day. It has really helped with 1) itchy skin and 2) ease of breathing.

And at my December appointment, the oncologist raised no objection to loratadine.

Lowering our histamine reaction is worth trying!

Of course it's best to check with your own doctor! Having ET means we can't be casual about even OTC medications.

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@janemc

At your suggestion, nohrt4me, about a month ago I started taking loratadine (generic Claritin) every day. It has really helped with 1) itchy skin and 2) ease of breathing.

And at my December appointment, the oncologist raised no objection to loratadine.

Lowering our histamine reaction is worth trying!

Of course it's best to check with your own doctor! Having ET means we can't be casual about even OTC medications.

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Glad it helped! I hate adding more pills to my daily routine, but that itching can drive you nuts. And, yes, I talk to the doc about OTCs, too. I appreciated people bringing up questions about aspirin recently, which alerted me to ask about NSAIDs

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@arlene15

Question, does anyone with essential thrombocythemia JAK2 taking 500 mg of Hydroxurea twice a day have itchy skin? If so what helps? Drives me crazy in the evening and at bedtime.

Jump to this post

I have itchy skin on one 500 MG per day. When I was put on two a day on the weekend, it drove me crazy, along with other increased side effects so went back to one a day.
The Cancer Clinic pharmacist told me to take an antihistamine when needed. It does help.

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@nohrt4me

Glad it helped! I hate adding more pills to my daily routine, but that itching can drive you nuts. And, yes, I talk to the doc about OTCs, too. I appreciated people bringing up questions about aspirin recently, which alerted me to ask about NSAIDs

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Apparently NSAIDs interfere with aspirin's beneficial effect on our blood.

So taking aspirin and any NSAID at the same time would be counterproductive.

Thank you again for the loratadine suggestion!

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@et1055

I have itchy skin on one 500 MG per day. When I was put on two a day on the weekend, it drove me crazy, along with other increased side effects so went back to one a day.
The Cancer Clinic pharmacist told me to take an antihistamine when needed. It does help.

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Thanks for the suggestion.

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@arlene15

Question, does anyone with essential thrombocythemia JAK2 taking 500 mg of Hydroxurea twice a day have itchy skin? If so what helps? Drives me crazy in the evening and at bedtime.

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Hi Arlene, I was diagnosed with ET Jak2 Nov. 2022.
I am taking 1000 mg per day at night. I am taking
1 Zyrtec in the morning. No other meds.
I changed my face lotion , body lotion, toilet tissue,
soap, anything what touches my body to parfume free
and alcohol free. Not wearing any make up or Mascara.
I am almost 70 years old, would not help much anyway.
😎😎
I am taking lukewarm showers, not hot snd cover up
when I am outside in the sun. It is working for me.
Hope this will help. Let me know.

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Thanks for this information. I’m 73 and was diagnosed in August. Just trying to adjust to living with the symptoms. I appreciate learning from others who have this blood disorder.

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@ina2022

Hi Arlene, I was diagnosed with ET Jak2 Nov. 2022.
I am taking 1000 mg per day at night. I am taking
1 Zyrtec in the morning. No other meds.
I changed my face lotion , body lotion, toilet tissue,
soap, anything what touches my body to parfume free
and alcohol free. Not wearing any make up or Mascara.
I am almost 70 years old, would not help much anyway.
😎😎
I am taking lukewarm showers, not hot snd cover up
when I am outside in the sun. It is working for me.
Hope this will help. Let me know.

Jump to this post

I am mostly makeup free, too. I find I can mix a dab of Almay or Neutrogena foundation in with the moisturizer. Evens out the skin tone so I don't frighten small children ...

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