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@panamsandy

May I ask how old you were when you were diagnosed? Did you have a +JAX2 mutation. Any side affects with HU? I'm new to all of this and am gathering info. Thank you in advance.

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Replies to "May I ask how old you were when you were diagnosed? Did you have a +JAX2..."

I am 75 and I just started taking Hydrea every other day. I’m new too. I’ve only had 3 capsules so far. I take them at night with lots of water with some food. No side effects so far. Hope you do well!

I was 60 when diagnosed, but hemo looked at past CBCs and said elevated platelets were there starting about age 54.

I am CALR, not JAK2, and never had a clot, so only aspirin until platelets showed rising trend into 800s at age 64. Started 500 mg every day. After a year platelets stalled at 600s, and an extra 500 mg added Mon Wed Fri.

No side effects with HU outside of constipation and barely perceptible hair thinning, which could be age, ok now with more fiber and probiotic, as suggested by hemo. My energy levels were MUCH improved after starting HU. Blood levels stable in 400s for years.

I am 70 now and moving into 17th year with ET. I do feel I am aging faster than friends in their 70s. I am still mentally with it, but less energy and easily discouraged. Part of this is that I really hate retirement, and we have very limited means. ET adds to my stress. Exercise and trying to stay interested in things helps with all this.

Asthma, allergies, skin sensitivities are worsening with age. Right now these are manageable with over-the-counter products. I also have mobility issues due to severe scoliosis.

Overall, I'd say that HU has helped m at least in the short term. Not everybody responds the same, especially if docs start them out on big doses all at once. Ask your doc if you can ease into it.

My dad had ET 20 years ago. Care is SO much better if you get a doc who's up to date. Even so, Dad lived to be 82 and died of something unrelated.

Hope this helps!