Anyone know about polycythemia vera (PV) and risk of osteoporosis?

Posted by mcvorbs @mcvorbs, Sep 11 2:56pm

I’ve been taking JakaFi for 1-1/2 years. Last bone scan showed serious osteoporosis. I do endure bs k snd neck stiffness.
Is Jakafi causing these symptoms???? (Side effects).

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Colleen Young, Connect Director | @colleenyoung | Sep 22 8:06pm

@mcvorbs, sorry to hear about the recent scan showing osteoporosis. Polycythemia vera (PV) is a myeloproliferative neoplasm (a type of blood cancer) and patients with specific myeloproliferative neoplasms (MPNs) face a nearly 20% higher risk of developing osteoporosis and fractures (https://www.mpnallianceaustralia.org.au/mpns-and-osteoporosis/)

Osteoporosis or bone loss is not listed as a side effect of the medication Jakafi (ruxolitinib).
- Ruxolitinib (oral route) https://www.mayoclinic.org/drugs-supplements/ruxolitinib-oral-route/description/drg-20075326

@mcvorbs, has your hematologist recommended a treatment plan to help you avoid fractures due to bone loss?

milkweed | @milkweed | Sep 23 7:19am

I’ve A Lot of experience with this. I was diagnosed with ET 8 yrs ago, taken off of estrogen(now back on) and have had 6 stress fx since. I’ve worked out my whole life taught strength training classes for years but my mistake was I was afraid to be on a therapeutic dose of estrogen premenopausal and post menopause. Get an endocrinologist and talk to your GYN.

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