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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 4 hours ago | Replies (400)

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@nypara66

Heeey! This is the first time I’ve read someone compare the PV symptoms with those of menopause. I am in EXACTLY the same situation. Tingling, headaches, brain fog, flush face, all PV symptoms and all menopause as well. I guess in the end it doesn’t matter which is causing what, as long as we keep our blood counts in check. It really feels like we are being hit with a double play but we move forward. I was diagnosed in January. I’m 56 and began “The change” just over a year ago. I had 6 weekly phlebotomies and then monthly and now I’ve gone 8 weeks. On and off Hydroxyurea. When stopped platelets shot back up so I’m on them for life I’m told. Played with dosage and for 10 weeks I’ve been steady so hoping we got it right. Just 3 X a week which isn’t bad. Also it’s super cheap compared to the other medication that is offered if this one doesn’t work. I wish you luck and look forward to seeing you get this crap under control 😊

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Replies to "Heeey! This is the first time I’ve read someone compare the PV symptoms with those of..."

You're absolutely right about menopause symptoms and I've got bad allergies and that gives me headaches and major fatigue. It can be very hard to know what's what with the fatigue that's for sure. I'm 60 and done with the changes and the PV has blessed me with bad hot flashes more than the menopause, I've always run hot, have never liked hot weather....love to ski, fall hikes, football etc. This forum has been a lifesaver for me to hear stories, feedback and encouraging & helping others always makes us feel good.
I always say, it could be SO much worse, I'm not in a wheelchair, I'm not getting my breasts cut off, I really feel for many who go through those challenges with such courage & grace.
Life is a gift, I plan to have fun and enjoy many hobbies that bring me joy for a VERY long time!!

Stay strong 💪 ✨️ 💓