polycythemia vera: Rusfertide in stage 3 research: Any info?

Posted by rmegg @rmegg, Feb 8, 2023

There is a drug called rusfertide in stage 3 research. It is showing great promise in managing hemtocrit thereby avoiding phlebotomies.

What other info does anyone have?

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That's promising (going through my first phlebotomy today; Hydroxyurea brought my number hairline after 100 mg and then 1,500 mg a day.. so a phlebotomy with 1000 mg a day ( we are science experiments )! I hope this will be answer i'm looking for in the future! rmegg @rmegg, God Bless you, prayers for you too!

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rmegg @rmegg while my first phlebotomy help; numbers were 300 down from 700, short time. I felt so much better, the extreme exhaustion was 10 and noticed exhaustion was 3 felt so much better but short term memory / weird stuff was horrible- I made sandwich, forgot to un-wrap the cheese slice and mouth full of plastic, gave husband lunch box but forgetting put food in it, go into a room and forgot why I went into the room and miss place things. Someone told me - that's a stroke symptoms. Blood Pressure swings 100/70 - 251/159 (after my phlebotomy; 100/70- 150/100 it helped lot. It's been 2-weeks; all the symptoms are coming back and they took more blood; numbers are creeping up and I'm feeling it. It's a month in between phlebotomies. It's like hugging a bear, nice and warm but you don't know when he will bit! Polycythemia Vera is roll-a-coaster ride.

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