New to Hydrea for ET

@jodyjazz
You might be close about my being a dragon. LOL. My husband prefers to use the definition in Greek mythology of a Chimera being a fire-breathing female monster with a lion's head, a goat's body, and a serpent's tail. He feels that is my spirit animal now! 😂 I’m old too and find that I still appreciate and enjoy being able to learn something new every day!

Thanks, you are delightful, and I am sure your husband thinks so too!

@ebertolis
My hair has thinned and my gut acts up every so often, which I treat with kefir. If your numbers are moving up take the HU. I wish my onco had started me early as a precaution since my counts kept moving up. My treatment in the hospital probably saved my life as the count moved from 1000 to 1500. I didn't die but I lost my toes from a clot and gangrene. The HU has been scaled back now and my count is 250 for the last year. But the damage is done.

Hi,@bobt70
I'm awfully sorry for you. I take HU (2x500g/day) now since mid-February.
Best regards.

@jodyjazz
Yes it is a thing. I am hard to tan burn only. My first week on HU I didn't think it would hurt didn't realize that after 4 days the HU would cause me to burn. But I wore a tank top to help move some furniture with my family it took about 4 hours well my arms and shoulders got red not much but I learned that lesson fast. I have already had some pre skin cancers removed. I too bought some of the long sleeve shirts with SPF for the summer. Good Luck

@Ivickieannb57
Oh gosh, I live in Florida (all my life) I dislike sunscreen intensely. Of course at 79, I have had several pre-cancers and cancers, frozen, biopsied, or removed. I guess I am not in any danger cause I could not be in the sun for four-hours, without getting too hot. I do love to water and still swim every day.

It’s been exactly one year to the day that I started taking Hydrea for ET. I made my first post on this site on February 22, 2025 expressing my concerns about taking the drug. I was pretty scared. I am happy to say that a year later, my concerns never materialized. I did not lose my hair, my platelet counts are in the normal range and I am living my full life with medication. I’m as active as ever and still enjoying the out of doors with no reaction to the sun on my skin. Of course other aspects of my CBC tests have changed but they don’t seem to have brought me down as my energy levels are bout the same as I have adjusted to the medication. Along with starting Hydrea on March 4, 2025, I also started a tablet of biotin. My granddaughter turns 16 today and we are both marching forth!

@mfeley

YAY!!!!

I totally understand your angst. As a 76 year old female, I felt great before the blood test said I had ET plus polycythemia. They put me on 500 HU every day, now 4X a week. The only thing I have experienced is that I tire much more easily and maybe itch a little more. My hair is doing just fine, and I think that hair loss is rare. Good luck, stay positive.

I'm a 78 year old woman withET , JAK2,
diagnosis 3 months ago.
On Hydrea 500 Daily, unfortunately my hair is definitely thinning, especially noticeable on the top. I just ordered 7" wide stretchy headbands and they have helped me feel more comfortable about being around others.
Hope this is helpful.