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Hi All — I’m new here. I was diagnosed with PV in Nov ‘22 (I was diagnosed at age 52). I take 2 baby aspirins (morning and night) each day, and have been in an interferon called Besremi, which I take as a shot every two weeks. Generally is doing an ok job controlling my blood counts so far, with me needing a phlebotomy perhaps every few months (just started taking the shot in April, so it’s early). @jerlin I also take two Atarax (hydroxyzine …25 mg in morning and night) for itching. It is mildly helpful. The hour or so after skin contact with water/shower is still maddeningly itchy. Has any one out there come up with a different strategy that eliminates the itch? Or, is this just something to expect for life? Thanks in advance for any input!
Replies to "Hi All — I’m new here. I was diagnosed with PV in Nov ‘22 (I was..."
I understand that itching too well, when I first got diagnosed with PV I went through itching for a while God I hated taking a shower lol. Hydroxyzine did not work for me because my blood would not slow down from making more blood clips I was put on Jackifi immediately after hydroxyzine would not show any improvement
Once I switch to Jakafi the itching went down to a bare minimum. And was I ever happy. The aspirins did not work for me but being in the hospital for 5 days intensive care because I had a blockage my heart and lungs since then my heart doctor put me on eliquis as a blood thinner so everything has been working out well. I have had this blood disorder for 12 years.
I wish I had good advise about the itchy. My itch is after I shower, my scalp and skin. I put on Gold bond on my skin works well so far. I try not to take but luke warm showers and that does help.
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Welcome to Connect, @sanjayd. You’re right, that itching from PV is maddening!! I don’t have PV but had elevated hemaglobin/hematocrit for a period of time as a side effect going through medical treatment. I loathed taking a shower! I think my husband thought I was losing my mind because he expected to see welts or something denoting the itchiness. Nope! But the itchiness was almost unbearable at times.
We have quite a few members with PV and I found this conversation for you with @eileen11108 @jerrlin @splashgirl1961 @morfar @shaha75 @sandy1959 @frances007 and so many others who may be able to enlighten you on what has worked for them.
https://connect.mayoclinic.org/discussion/pv-itching-not-after-bathing/The link is posted below.
Do you feel any difference in the itching after a phlebotomy?