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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writernana | @writernana | Mar 1 3:06pm

I was diagnosed Jan 2026, I'm 78 year old woman

zmg | @zmg | Mar 1 7:48pm

I was diagnosed with ET/jack2 mutation back in August 2025.
After lots of thinking and talking to the hematologist I agreed to start Hydro one pill daily. So far the only side effects is fatigue and rosacea flare up.
Good luck to you!

bobala | @bobala | Mar 1 8:51pm

In reply to @writernana "I was diagnosed Jan 2026, I'm 78 year old woman" + (show)

@writernana I was diagnosed in March 2025. 500 mg Hydrea every other day. My platelet started at 643 and are now 427.

ina2022 | @ina2022 | Mar 2 6:38am

In reply to @nohrt4me "@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at..." + (show)

@nohrt4me Thank you for your reply. I do not like the
hydrocortisone cream. I will try CeraVe.
I am sure more side effects will show up. I am on my 4th year taking Hydroxuria. Overall I feel fine.

hipsu5 | @hipsu5 | Mar 2 5:12pm

In reply to @nohrt4me "@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at..." + (show)

@nohrt4me
I am not familiar with CeraVe. I just googled it and checked Amazon. There are so many different kinds that it is hard to know which one to order. Pages and pages! I ordered CeraVe SPF 50 sunscreen and also SPF 30. SPF 30 was available in a smaller size for traveling. I can fit it in my purse. We are planning a cruise down alongside the eastern Central-America coast. So I will need sunscreen.
- Hipsu 🙂

nohrt4me (Jean) | @nohrt4me | Mar 2 7:15pm

In reply to @hipsu5 "@nohrt4me I am not familiar with CeraVe. I just googled it and checked Amazon. There are..." + (show)

@hipsu5 Sorry, I didn't know. I just get a big jar of the moisturizer for dry skin, or I use the drugstore equivalent of CeraVe that's 30 percent cheaper.

I use VaniCream sunscreen 30 SPF for a day outdoors. But I don't worry too much as I live in Michigan where we are not exactly sun-drenched.

Have a nice cruise!

dewz13 | @dewz13 | Mar 3 9:10am

I was diagnosed about a week ago. (63 years old) Still getting my head around it. Reading about Hydrea made me realize it is pretty serious. Glad I found this group.

dewz13 | @dewz13 | Mar 3 9:11am

In reply to @bobala "@writernana I was diagnosed in March 2025. 500 mg Hydrea every other day. My platelet started..." + (show)

@bobala How long did it take to get your platelets down?

julmo | @julmo | Mar 3 11:46am

In reply to @loribmt "Hi @julmo Welcome to Mayo Connect. Thank you for sharing your story with having ET and..." + (show)

@loribmt thanks so much for writing. Believe it or not, I was diagnosed from the emergency room with a cat bite. My kitten was playing with me and I got bit. The emergency room told me she saved my life. I was hospitalized for a month from side effects from hydroxyurea. I’ve had a very rough time, but I’m finally stabilized. I still have a lot of side effects, but they are manageable. It’s nice to be able to chat with people in my situation. It makes me feel less alone.

julmo | @julmo | Mar 3 11:50am

In reply to @dewz13 "@bobala How long did it take to get your platelets down?" + (show)

@dewz13 I am finally stabilized after being dx'ed mid November 2024. My platelets now vary from low 300s to mid 500s. I still get my blood work done every two weeks and have only been stable for about two months. To be honest, I didn’t think I would ever get there.

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