How Many Of You On Here Are Around My Age? 32
The drs tell me pv is super rare but that IM rare because I am only 32. I started having a ton of symptoms during the covid shut down..broke out in shingles for the first time, insane pain in my neck, upper back, ankles and knees, migraines every other day, brain fog, extreme fatigue and serious memory issues. So that was 2020 and I JUST FINALLY got a diagnosis this year! Its been a really hard few years getting through countless tests, phlebotomies and finally a bone marrow biopsy trying to get… read more
I was in my 30s when I was diagnosed with ET. That was over 30 years ago. It progressed to PV about 9 years ago. My daughter was diagnosed with a JAK2 positive ET in her 30s that looks like it may be moving towards PV. MPNs can most certainly occur at any age, including in childhood/adolescence.
Age is not a part of the diagnostic criteria for PV or any MPN. No doctor should be thinking to rule out PV based on age. The most recent evidence demonstrates that the JAK2 mutation is often acquired early in life, possibly in utero. It is decades later that something happens to trigger the disease state. Some people carry the JAK2 mutation without demonstrating a MPN, a condition called Clonal Hematopoiesis of Indeterminate Potential.
I have lived a good life managing a MPN for 30+ years and at age 67 continue to do so. I have tried various treatment strategies. I could not tolerate hydroxyurea and it was ineffective. You are too young for HU to be an appropriate first-line consideration. I did stay on a phlebotomy-only protocol for a while, but the induced iron deficiency symptoms were in the long run worse than the PV symptoms. I started on Pegasys and switched to Besremi. This has, for me, been the most effective and easiest to tolerate treatment approach I have used to tret the PV. I feel better now than I did 10 years ago and way better than when I was so iron deficient from the phlebotomies.
If you have not already done so, it is a very good idea to consult with a MPN Specialist. Most doctors, including hematologists, have very little experience with MPNs. Here are two lists.
https://mpnforum.com/list-hem./
https://www.pvreporter.com/mpn-specialists-canc...
Wishing you all the best.
I forgot im 33 now lol same diff! How many of you are in the 20-45 range lol
Thank you for posting this both Ashley and Steve. I am 46 and have been recently diagnosed with PV with JAK2 and much of the same symptoms. I'm tired of the brain fog, migraines and extreme fatigue. However, I'm considering natural methods for treatment. Does Besremi cause any heart issues and thyroid issues? I've read the warning labels on the product which states this but my doctor has been saying its very rare. What have been your experiences taking Besremi Steve, if you don'tmind me asking?
Thanks All who commented so far. I was diagnosed with ET last year at age 44. As apparent by my labs, it went undiagnosed four years prior to that. A clot and unbearable pains in my fingers, toes, abdomen is what finally led to a diagnosis (yay military medicine). I've been on 1,000 mg HU and Aspirin for the last year. My platelets have been maintained around 230 but everything else is in the dirt. Low WBC, RBC, Hemoglobin, Hematocrit.
I'm hearing more and more of it even with young children and it's shocking. I can't help but think it's environmental GMOs I don't know but it's just so young but research is incredible just get on YouTube and find good webinars for TV and you'll learn a lot that's what I do anyway
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Is Anyone Currently On The Medication Combo Of Interferon (Pegasys) And Ruxolitinib (Jakafi)?