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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (421)

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@kellysc

Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!

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Replies to "Good morning! I wish we could have a cup of coffee together. Your post sounds familiar..."

Thank you for the reply! I am in Cypress, TX if you’re near there. 😉

I have started a list of odd symptoms as well as generalized questions I plan on asking.

My insurance is UHC Kelsey Seybold, so as far as I know, I don’t have the option to go to places like MD Anderson or Mayo, but I’m definitely going to investigate. I don’t think there’s an MPN specialist with Kelsey. 😥