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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)Comment receiving replies
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?
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Yes, for approx 10 to 12 years I've ranged from osteopena to severe to extreme, currently at osteopena level. I've taken medications and for about 3 years Prolia which I asked to get off and started on pill form as the side affects were debilitating. I asked my hemotologist if my blood issue could be medication related because I don't recall having elevations prior to taking osteo meds but she advised no.
I also have elevated chlorestrol and hypothyroid. I take only osteo and thyroid meds. I'm working with my other main physician a DO taking a regiment of supplements and exercise and 64 oz of water. I have had changes where I have gotten infections when I hardly ever did before. More susceptible to thing.
This site is a wealth of information I haven't found other places. Thank you.