Osteoporosis

[Ashtin]

Is there any connection between Polycythemia and osteoporosis? I have been taking 500 mg of HU daily for the last 8 months. DEXA results show -2.8 for hip. I'm clueless!

Thanks

[hunter5582]

This is not something I have heard of or looked into before. I actually experience intermittent hypercalcemia as a result of the PV. I think the answer is that there is perhaps a link between PV and osteoporosis. The evidence seems to be mixed. Here are a few references.

ncbi.nlm.nih.gov/pmc/articl...

atlasofscience.org/osteopor...

link.springer.com/article/1...

tandfonline.com/doi/abs/10....

This would be a great topic for input from the MPN Specialists at MPN Voice. Perhaps Mazcd can check for us. I would like to hear more about this as my daughter also has a MPN and we both have Neurofibromatosis Type 1, which also predisposes to osteoporosis.

All the best.

[Mazcd Partner MPNVoice in reply to hunter5582]

I forwarded the query to Prof Harrison and her answer is - no connection. Best wishes, Maz

[hunter5582 in reply to Mazcd]

Thanks for checking Mazcd. It can be tricky figuring out what is and what is not related to MPNs.

[Ashtin in reply to hunter5582]

Yes, thank you both so much. I am finding mixed opinions from the professionals about what is related to MPN and what isntThanks again!

[hunter5582 in reply to Ashtin]

That is actually quite common with MPNs. Deregulation of the JAK-STAT pathway has wide ranging effects that are not always understood. There is more emerging in the literature on an ongoing basis. Sometimes we have truly unrelated cooccurring conditions. Sometimes there are manifestations of the MPN that are rare or not well understood. Sometimes, it is the treatment for the MPN that causes the symptoms we experience. There is a hypothesis that chronic iron deficiency can cause a loss in bone density. As Janis12 indicates, some meds can cause this issue. So can aging, particularly for females.

The bottom line is that we sometimes just have to treat the symptom regardless of the cause. Hope you get it all sorted out soon.

[bordeauxgirl]

I have PV jak2, my doctor referred me to

Rheumatology as I have a tendency to have inherited Arthritis both R & O (mother side) and I am having an infusion of Zolendronic Acid to help protect my bones in 2 weeks time .

[Janis12]

Hi, I have ET and take Hydroxycarbomide. I was informed by my consultant MPN specialist that Hydroxy will effect my bone density 'and not in a good way'. This concerned me as I already have low bone density so obviously this was not going to help. At my last appointment I saw a haematologist rather than the regular MPN specialist and asked him what he thought about the bone density issue with hydroxy and he said he was not aware there was an issue. So who do we believe? I just keep exercising and hope for the best that I do not start fracturing. I will request a Dexa scan in the near future to see if there has been ant deterioration although I am not particularly keen to go on meds for osteoporosis as they upset your stomach as of course so does hydroxy. We need to be one step ahead of the game, knowledge is everything, best of luck.

[Ashtin in reply to Janis12]

I am fairly new to the MPN game and yes I'm finding it all so confusing. DEXA showed a marked difference from 2 years ago. Have an appointment with a Rheumatologist next month so I'll hear his opinion of whether HU is the culprit.Thanks for your reply!

[Janis12 in reply to Ashtin]

The comparison will be interesting, do you have a history of osteoporosis in in the family? There are other drugs which also have an impact on our bone density for instance proton pump inhibitors (ie omeprazole) commonly used for reflux issues and also steroids. Caffeine is also claimed to have an effect on our bone density, I think it may interfere with the absorption of calcium. It is easy to become obsessed about all of this I suppose it is all about moderation. Lets hope Hydroxy is not the demon to our bones that we are believing it to be at the moment.