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Prolia black box warning?

Osteoporosis & Bone Health | Last Active: Apr 28 8:56am | Replies (59)

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@thisoldewe

Thank you formisc for your info and support.
Yes, I am realising just how critic my timing is at this very moment... but I cannot get an appointment until 13 March.
I am very thankful for the Connect buddies who have educated me on this problem and my arthritis specialist who picked up on my track record since the Prolia started. --- the timing of the past 1 1/2 years is suspicious, when even for me that is a lot of infections, when I am practising such high levels of lung hygiene and isolation from people and masking at all times!
May I ask another question: What are the BTM tests that you are mentioning??
Thanks again for your input. [isn't Connect great?]

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Replies to "Thank you formisc for your info and support. Yes, I am realising just how critic my..."

Hi Christine,

You mentioned that your next appointment is on 13 Mar. Is this earlier or later than 6 months after your last Prolia shot? Because even if you were to be prescribed Alendronate on that date, it may not be the day of choice for your weekly dosage and any delay beyond 6 months adds more risk. In fact, Prolia can wear off earlier, say 5 months, in some people and later, say 7 months, in others. 6 months is just a convenient period that doctors have decided on. Hence, my earlier suggestion to start Alendronate a little earlier if possible.

And if you cannot get an earlier appointment, i would even consider "borrowing" 1 or 2 tablets off someone! In fact, it would be an opportunity to test if there are any significant side-effects before commiting to the full 3 or 6 months' prescription.

From your question, i guess that, like me, your doctor did not do any BTM (bone turnover marker) tests prior to starting you on your osteo meds which is a shame as they would be very useful as a baseline for comparison and they would have guided the doctor on the appropriate choice of med. The 2 main BTMs that are widely accepted are CTX which measures resorption/bone-breakdown activity and P1NP which measures bone-building activity. Personally, as i did not have any previous BTMs done, i will opt for tests for both CTX and P1NP plus maybe PTH (for parathyroid - high PTH can cause bone loss), calcium and Vitamin D.

For Prolia and anti-resorptives in general and when transitioning from Prolia, CTX is useful to show how effective the med is in decreasing resorption activity. Prolia has a very quick and powerful effect of reducing CTX but once you stop taking Prolia, the CTX shoots right back up because of increased resorption activity that was previously suppressed and this is where the risk of multiple fractures comes in. So, when you transition from Prolia, you need to monitor your CTX numbers closely (every 3 months is best) to determine if your choice of relay drug is working. Without having any baseline numbers to compare with, you, like me, will have to rely on reference ranges of healthy women and absolute numbers. I am still looking for more info but from what i have read so far, i think i would be comfortable with a range for CTX of between 200-400 but may get worried if it was say, 800 and higher. Btw, CTX needs to be fasting, early and at consistent times.

If you wish to read up more on bone markers, you can click on my user name and it will lead you to another discussion which i started called "Support For Those Quitting Prolia" where i posted links to various articles on BTMs.

At this point, i should at least let you know that there is still much debate about how useful exactly BTMs are. Some of it is due to the variability of readings caused by various factors - time, fasting state, other meds etc. But given that our only other monitoring tool is DXA which is once every 1 or 2 years, i guess it's better than nothing

Yes, Mayo connect is amazing!!!