Osteoporosis and PV

[Mollycat]

Does anyone else suffer from osteoporosis and PV - diagnosed with osteoporosis 3 years ago at the age of 51 and with PV 2.5 years ago at the age of 52. I am taking aspirin and hydroxy (1,000 a day) with venesection about every 3 months (only started hydroxy in oct 2014 when platelets reach 1.2 million and blood level not controlled by venesection alone).

Taking fosamax for osteoporosis but recently diagnosed with 3 wedge fractures in thorasic spine!

Has anyone had kyphoplasty for spine fractures? Has anyone been recommended to take teriparatide (Forsteo) at the same time as taking hydroxy? Not sure if there is any problem taking both drugs. Will see hemotologist later this week but interested if anyone else has had similar experience as all of this is stressing me out - blood problems and bone problems!

[bruddery]

Hi there Mollycat. I was diagnosed PV in 2007 taking hydroxy ,, allopuriol, aspirin, atorvastatin and zotorol - for excess uric acid as a result of pv. Was diagnosed with osteoarthritis 18 months ago and am given a prolia injection every 6 months and also take calcichew D3forte. And 'lucky me' I have just been diagnosed with myelofibrosis and other cellular activity!!! I have up to now been very fortunate with the osteoarthritis but I cannot imagine how worrying it must be to have had so many fractures and I have to confess I have never even heard of kyphoplasty. I'm sure someone here on the site will be able to advise there is always someone with knowledge the site is a huge support. Lots of positive members. Good luck with it all. Bruddery.

[Mollycat in reply to bruddery]

Dear Bruddery

Thanks for your kind message and very sorry to hear that your PV has progressed to MF. Hope you manage to stay positive and keep everything under control.

Best wishes

[Mollycat in reply to bruddery]

Dear Bruddery

Sorry - I meant to ask how you have found the Prolia injections - this was one of the other drugs suggested by my osteoporosis dr to build bone - I was a bit concerned by the side effects and whether having had the injection you are then stuck with the side effects for 6 months?

Grateful if you could let me know your experience with Prolia.

Thanks

[bruddery in reply to Mollycat]

Hi Mollycat. I have found the prolia absolutely fine with (thank goodness) no side effects. It certainly seems to work for me. I have to admit I would sooner have one injection every six months than yet more pills!!! Good luck with everything. Bruddery

[MPort]

Hi Mollycat,

it is hard to have both PV and osteoporosis, especially hearing you have wedge fractures.

I have PV since 2005 (on Pegasys Interfeton) and osteoporosis for about 20 years. I have asked bone consultants and haematologists about a connection but they are not aware of any.

I took Foximax/Calcichew for years and it didn't seem to improve density. I wanted to get the 6 monthly injection but the bone consultant rejected it. She went to a conference and brought up its use with patient with PV/interferon. The consensus opinion was not to use it. So now i take nothing.

My bone density improved slightly when i swam, walked and got more sun. I keep up the walking but swimming with pruritus in cool water is harder to achieve.

i would research wedge fractures/osteoporosis and get the background on them. Then research bone consultants and find an enlightened one. I would want to know if there is anything i do that would make them worse or give me more of them.

Hopefully your haematologist will be able to advise on drug combinations.

let us know how you get on.

[Mollycat in reply to MPort]

Dear MPort

Thanks for your reply. I am interested in what you said as my Dr for osteoporosis has recommended Forsteo which is a daily injection as first choice to try to build bone and Prolia - the 6 monthly injection as the second choice - he has suggested I check these drugs out with my haemotologist for any interaction with the hydroxy tabs which I will and will let you know what he says. Am looking for a spine specialist to discuss treatment options. Will let you know how I get on.

Thanks again.

[Aime]

Hi Mollycat, sorry to hear of your bone problems. I have escalating problems with osteoarthritis and inflammation in joints which is definitely spreading to feet, toes, knees, etc. I have pv but controlled by venesection only at present. I am getting worried about my future mobility and the thought of more ops. I am good at growing bone spurs too. Take care, every sympathy Aime.xx

[geordie]

Hi I was diagnosed with PV in 2011 and hava a heavy symptom burden including bone pain. In October 2017 I started to have severe back pain and put it down to a recurring back problem with isthmic spondylolisthesis in the L5 vertebra. Unfortunately the pain continued and becomae more acute to the level I could not walk or stand ( have been bed bound now since November). To my horror after 2 MRI scans I found out that I had compression fractures to my 5 lumber vertebra 2 at 50% Loss of height and 3 less severe all fractures are active, meaning that every time I stand or sit they continue to compress ( I am 3 inches shorter now). The surgeon has suggested kyphoplasty (cementing each vertebra to stabilise) but is concerned about risk factor of blood clots due to PV during operations (at least 3 as only 1-2 vertebra can be cemented at a time). I have had a DAX scan to check bone density for osteoporosis, but not had results yet. I would be really interested if the PV is a cause of the loss of bone density or something more sinister is going on.