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Hydroxyurea vs Agrilyn: Anyone switched from HU to Agrilyn?

Posted by jp2000 @jp2000, Oct 30, 2025

I’m a 71 y/o male with ET. Diagnosed in 2015 with all the requisite tests including bone marrow biopsy. I have the CALR mutation. I have been on HU for over 10 years. At first I had ankle ulcers but they subsided within 6 months. I have been taking 1000 to 1500 mg of daily doses for almost 10 years. This year my platelet count started to bounce around from 400 to 700 without any apparent reason. It’s very peculiar. Sometimes it would go up with 1500mg and then go down with 1000 mg. My doctor took me to 2000 mg daily and my ankle ulcers reoccurred after two eeeks. We went back to 1000 mg daily and slowly the ankle ulcer healed after going to wound care and stopping treatment for about three weeks. Platelets still hovered in the 500 to 800 range bouncing back and forth every two to 3 weeks.

My doctor took me off of HU for 6 weeks and now wants me to consider Agrilyn. I’m reluctant going from the devil I know to a new drug. It appears that I can tolerate up to 1500 mg of HU daily. My only issue with HU has been slow to heal ankle wounds (which I’ve been able to manage). I had some fatigue but in the past 6 months my GP noticed a vitamin D deficiency and has had me on supplements. This has almost eliminated my fatigue.

Has anyone switched from HU to Agrilyn? What’s been your experience and side effects and how effective has it been in reducing counts? Also what is your typical dose?

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nohrt4me (Jean) | @nohrt4me | Nov 3, 2025
In reply to @nancyra "@jp2000 Errivedge is for advanced Basel cell carcinoma not for ET. I ended up using an..." + (show)
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@jp2000 Errivedge is for advanced Basel cell carcinoma not for ET. I ended up using an immunotherapy cream for 6 months instead of this very powerful (and expensive) drug and that eradicated my skin cancer! so glad I listened to my gut.
There is a lot of ‘woe is me’ on this site in regards to having ET because a few years ago some organization attached the word cancer to it. That word freaks everyone with ET out. When I was diagnosed in 1999 it was called a blood disorder. Attitude is everything when it comes to your health issues.
I’m still here and healthy after a diagnosis almost 30 years ago. We all have our individual health journey filled with highs and lows

Btw I have bloodwork every 3 months so I am monitored remotely throughout the year via Telemedicine.
I realized I am one of the more fortunate ones with this diagnosis- just want to shine a positive light for those with this ‘disorder’ 😊

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@nancyra I have had ET x 17 yrs. My dad also had it, so I knew it wasn't a death sentence, and I was able to avoid some of the shock and fear others feel on first being diagnosed.

However, it wasn't just "some organization" that changed the classification to cancer. It was the World Health Organization. Some docs don't accept that change. But whether disorder or cancer, we've got it for life.

Medical textbooks for decades said that ET was an asymptomatic blood condition. It was rare and mostly found in older women. As a result, patient complaints were chalked up to something else, often post-menopausal changes. Wasn't until the last 10 years that docs have started to track symptoms.

ET can remain asymptomatic in many people their entire lives. They are lucky and probably don't get why others are complaining.

But ET can cause fatigue, deep vein thrombosis, strokes, heart and lung clots, enlarged spleen and liver, migraines, itching, and histamine increases.

Over the course of his last 15 years, Dad had clots, itching, fatigue, and enlarged spleen. They affected his quality of life even though he died at 82 of something else.

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