Polycythemia Vera and Osteoporosis

[Sheena2020]

I have had PV for four years and was just diagnosed with Osteoporosis. I just found out on the patient portal so I haven’t met with the doctor yet. Does anyone else here have both? Has anyone heard if PV can contribute to bone loss? I am concerned about the medications that are offered and if they are ok to take having PV and being on Hydroxyurea. I appreciate hearing your experiences.

[Bobadog]

Hi Sheena,

Sorry to hear you have osteoporosis.

I was diagnosed with osteoporosis after discovering ‘insufficiency fractures ‘ in my sacrum.

I had an MRI scan as the pain was much greater than my usual back pain,which is a result of degenerative discs and OA etc.)

Fractures settled down(repeat MRI confirmed ) after 8 weeks.

I was referred to a rheumatologist who arranged a Dexascan,which confirmed osteoporosis in sacrum,hips and thoracic spine.They don’t do full body Dexascan here in UK routinely.Worth asking though.

He prescribed Alendronic acid which I take weekly.There are various side effects but I decided to give it a try for 2 years.

My GP prescribed Vitamin D ‘Adcal-D3 caplets’ 750mg each.I take 2 twice daily.

My calcium levels are fine though.

Nothing drastic has occurred yet,with the Alendronic acid medication .

I’m taking 5 mg daily Ruxolitinib for my PV.

I am trying to include weights in my Pilates class,and more weight bearing exercises ,when my back pain allows…and I have the energy!

My main exercise is swimming and cycling .The daily dog walking distances are reduced due to my back pain .

Repeat Dexascan after 2 years,and then assess.

I think osteoporosis is more genetic than PV?

I’m interested to hear what the other folk think too?

Bobbie

[Frangi63]

I also have osteoporosis and take Risenodrate ( similar to Alendronic acid) and on hydroxycarbamide - ok so far. I see you’re in USA but Royal Osteoporosis Society here in UK has very good info (ros.org.uk) has very good info

[Ovidess]

Yes I have PV and osteoporosis, and both have been hurtling down the turnpike toward me for decades, I now see. Don't know about connection, but makes sense to me. Trouble in the bone marrow!