ET JAK2 on HU now with feet rashes and painful sores

Posted by mariaalive @mariaalive, Jun 10 6:41am

I was diagnosed 18 months ago and am a very healthy athletic 68-year-old woman. I have been taking HU 500 mg a day and one baby aspirin and my platelets hover in the high 500s but have recently jumped to 625. My doctor wants me to begin Anegrelide and then stop the HU one week later. I am hesitant and am also having breast surgery in two weeks. I have also been taking NAC 1800 mg based on the ongoing study at UC Irvine. Just looking for feedback.

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janemc | @janemc | Jun 11 4:35am

mariaalive, you're going through so much. I'm really sorry. It's good to know your doctor is carefully monitoring your situation.

Hope you will hear soon from others who've transitioned from HU to anagrelide.

nohrt4me (Jean) | @nohrt4me | Jun 11 7:50am

Anagrelide works as well for some people, but can cause cardiac rhythm issues. I am a cardiac patient, and anagrelide was nixed for me. A good rule of thumb is to always remind your hemo/oncologist of your comorbidities or they get ignored.

Dad also had ET, and anagrelide worked well for him. Foot and ankle ulcers went away after he stopped anagrelide.

If you are athletic, tell yr doc that you don't want to give up yr sports. That may also help him/her hit on the right alternative for you.

If your driver mutation is CALR like mine, you may not even need meds for awhile. Doc let mine run to almost 800 before he added HU. If you are active, healthy diet, and good body weight, you may not be at high clot risk until platelets run higher.

I don't know what NAC is

Good luck at Irvine!

nohrt4me (Jean) | @nohrt4me | Jun 11 10:22am

Oops, I misspoke: Dad's ulcers healed after he stopped HU, not anagrelide.

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