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

[Sheena2020 in reply to Bobadog]

Thank you for sharing your story. I saw my OBGYN, who ordered the dexascan. I don’t think they do a full body scan here either. My spine is good, but the osteoporosis is in the “neck” of my hip. There is no report of the other bones. She prescribed Boniva once a month, eating calcium rich foods and taking a calcium supplement and vitamin D, plus walking and doing weight bearing exercises.

I took one Boniva so far, and my throat and eyes itched right after but it went away. She said if I am itchy again after the second dose, to stop taking it and see an endocrinologist for other options. I am really nervous about it. Did you have any immediate allergic reactions to the Alendronic Acid?

[Bobadog in reply to Sheena2020]

Hi Sheena,

The Alendronic acid hasn’t caused any untoward side effects so I’ll probably stick with it.

Not sure how much good it will do.?

I have started taking L Lysine (amino acid?) with the NSAID which seems to help with the pain.This can be purchased online.

I’m sure if I worked harder at the weights exercises etc,it would help..this is rather sporadic for me ,depending on my back/knee pain ,fatigue levels after other doing activities (dog walking etc)

I agree with what Ovidess mentioned about the link between PV and osteoporosis too,

I do hope your next appointment goes well for you,

All the very best,

Bobbie

[Bobadog in reply to Bobadog]

Ps,

Lysine is supposed to help the body absorb calcium and play a role in the formation of collagen…

[Sheena2020 in reply to Bobadog]

Thanks for the info.

I try to do the exercises with weights a couple of times a week. I work til 2:30, and then walk the dog, and sometimes I am too tired for anything else too.

I have cold sores occasionally on my lip which I take Lysine for. I think I will take it more regularly to help with calcium absorption.

Thank you again!

[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

[Sheena2020 in reply to Frangi63]

Thank you for sharing your story and the information.

I took one Boniva so far, and my throat and eyes itched right after but it went away. She said if I am itchy again after the second dose, to stop taking it and see an endocrinologist for other options. I am really nervous about it. Did you have any immediate allergic reactions to the Risenodrate?

[Frangi63 in reply to Sheena2020]

No -.drink lots of water, sit or stand for 30 mins after taking and only eat or drink anything other than water 30 mins after taking is the advice

[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!

[Sheena2020 in reply to Ovidess]

Thank you for sharing your story. I thought it made sense that they may be related too. I asked my PV specialist and he said there is no link between the two, and I have since learned osteoporosis can be genetic.

Are you on a medication for the osteoporosis?

[Ovidess]

I'm on the lowest possible Besremi dose now, which has brought the HCT and platelets pretty much into right zones. I've refused all the osteoporosis drugs stubbornly (and perhaps stupidly), as some of the possible side effects are ones I already suffer in a more minor way. I just don't like what I've read about those drugs--helping the bone in one way and weakening in another.

[Sheena2020 in reply to Ovidess]

I agree. I don’t like having to take one of these osteoporosis drugs. If I don’t, the osteoporosis could get worse. I am hoping for the best.