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!
@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at night. Aquaphor is kind of heavy for me, but whatever works! I use CeraVe, which helps. If my feet are really bugging me, I use Benadryl gel (works better than the hydrocortisone cream for me), and I keep a cool water bottle at the foot of my bed to put my feet on if they get itchy and burning in the night.
@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.
@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at night. Aquaphor is kind of heavy for me, but whatever works! I use CeraVe, which helps. If my feet are really bugging me, I use Benadryl gel (works better than the hydrocortisone cream for me), and I keep a cool water bottle at the foot of my bed to put my feet on if they get itchy and burning in the night.
@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
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 🙂
@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.
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.
Hi @julmo Welcome to Mayo Connect. Thank you for sharing your story with having ET and what’s been working for you to keep your platelet levels in the normal-ish range.
2.2 million was super high! It’s encouraging to see that anagrilide has been working well for you and that you’re not having any of the issues you experienced with the hydroxyurea. Wishing you continued success along your journey. I hope you’ll pop into more conversations!
What led to your diagnosis of essential thrombocythemia? Were you having symptoms previously or was this through routine bloodwork?
@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.
@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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I was diagnosed Jan 2026, I'm 78 year old woman
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4 ReactionsI 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!
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2 Reactions@writernana I was diagnosed in March 2025. 500 mg Hydrea every other day. My platelet started at 643 and are now 427.
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4 Reactions@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.
-
Like -
Helpful -
Hug
1 Reaction@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 🙂
-
Like -
Helpful -
Hug
2 Reactions@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!
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Helpful -
Hug
2 ReactionsI 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.
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Helpful -
Hug
2 Reactions@bobala How long did it take to get your platelets down?
@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.
-
Like -
Helpful -
Hug
7 Reactions@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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Like -
Helpful -
Hug
4 Reactions