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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does itching subside with phlebotomy?

A myMPNteam Member asked a question 💭
Coeur D Alene, ID

My MPN specialist started me on phlebotomy as treatment for my PV. He says that once we get my hematocrit down to around 42 and keep it there, the itching will get better. Does anyone have any experience with this?

June 18, 2022
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Answer Summary

Members shared mixed experiences with whether phlebotomy reduces itching from polycythemia vera, with most reporting that lowering their... Read more

Members shared mixed experiences with whether phlebotomy reduces itching from polycythemia vera, with most reporting that lowering their hematocrit through regular phlebotomy alone did not significantly relieve their symptoms despite what their doctors predicted. Several members described finding better relief through medications like Jakafi, high-dose antihistamines, and hydroxyurea, though even these treatments often just reduced itching to a manageable level rather than eliminating it completely, with some members noting their itching worsened when hematocrit rose above 45 or paradoxically right after phlebotomy. A recurring theme was frustration over the unpredictable nature of pruritus, the lack of satisfactory medical explanations, and the emotional toll of persistent itching, with members offering solidarity and sharing experimental approaches like Beta Alanine and identifying high-histamine food triggers.

A myMPNteam Member

Still have itch after 2 years get ur blood levels most days will help some

June 18, 2022
A myMPNteam Member

My oncologist hematologist told me the same story; but was simply a fairy tale for me.

I had phlebotomy every 2 weeks, taking HU twice a day, taking aspirin to which plavix was added; took antihistamines. Nothing worked until I started Jakafi which didn’t take it away but cooled it down so that my hysteria became under control and I felt like I got my life back.

Pruritus has been worse the last month +. My RBCs and hematocrit are within normal range; some of my white cells are elevated and Chet are so chronically even durin periods on no pruritus; my platelets have been coming down since I started Jakafi.

No one has an satisfactory theory.

Hope yours gets better .🙏🏼

June 18, 2022
A myMPNteam Member

Toggling? I’ve read a little about Beta Alanine. Was curious about it.

July 5, 2022
A myMPNteam Member

No sorry it didn't work for me it actually got worse but I have started on Beta Alanine I take a quarter of teaspoon an hour before my shower 🚿 but after taking the Beta Alanine you will get toggling in your fingers for about ten minutes

July 4, 2022
A myMPNteam Member

My itching usually gets worse when its above 45 and then sometimes for a few days after the phlebotomy. I find more so these days that I am particularly sensitive to more foods with high histamine that cause itching.

July 4, 2022

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