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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)

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@chella65

My symptoms have been a slow roll over the past say 5 years. Im at 65 next month and I have changed many of my life activities. I began noticing I stopped enjoying the things I normally enjoyed either because mostly found it too tiring and not worth the effort or I would just wake up tired and irritable. I could not figure it out until this knowledge arrived. It all makes sense to me now. I have symptoms of exhaustion, weakness, foggy mentally, sleep problems, aches, and just recently sharp pains in different parts of my body and at varying depth. I can have a day feeling just a little off or have a day where I drag myself out of bed. I was the energizer bunny never able to sit still all my life but every day I force myself to get up and move. Having been highly athletic in my early years I've got a spine no one would dare claim if they saw the xrays and I along with doctors attributed many symptoms to aging and my spine issues.
As for the medications mentioned by the doctor, she only mentioned blood draws and or possible medications when the 6 months is up. She didn't mention any names. However, there was a recent advertisement for a Polycythemia study. I did inquire about it however it was all the way into Houston and I would not dare make that travel. I wish they would have offered it at one of their hubs like in The Woodlands but it was only offered at the Cancer Center in Houston. They were doing a study on a medication. It would have been nice to participate.

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Replies to "My symptoms have been a slow roll over the past say 5 years. Im at 65..."

It’s unbelievably frustrating when our life takes such an abrupt turn for no reason…not that having a reason makes it any easier to cope. But at least there’s a physical cause behind your shift in energy and changes that you’re experiencing.

Treatments can range from simple low dose aspirin and the occasional phlebotomy (a more refined and less traumatic blood letting than the dark ages 🙃) to medications such as hydroxyurea, Jakafi and others meant to slow the progression and proliferation of too many red blood cells being produced.
One of my go-to informational articles that’s helpful for newbies with PV is this one from Healthline.com.

https://www.healthline.com/health/polycythemia-vera

Do you also have osteoporosis?