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Posted 8/3/2023 11:16 PM (GMT -5)
OK, my bone density reading in December was
-2.4 (osteopenia but VERY close to osteoporosis).
Given that I was just on HT (Orgovyx) Dr Lam
suggested I get on Prolia, which I did a month ago.
So, this is supposed to improve my bone density thus
reducing my chances of breaking a bone, especially should
I fall. Great. One query: how long before it starts to improve
bone density?
But my real conundrum: I keep reading about severe
SE involving sudden broken bones while doing Prolia
and when stopping it. It seems very strange that we are
taking the drug to help reduce brittle bones yet the scariest
SE is...just that!

Mel
Posted 8/4/2023 1:13 AM (GMT -5)
Mel, Prolia helps the bones to absorb calcium. That is the reason for the high amount of Calcium D3 addition to the diet. It also is known that while on Prolia bones get stronger by blocking the mechanisms that weaken bones as we get older. This is called bone breakdown caused by osteoclasts. Prolia keeps that from happening. New research, as of 2021, suggest that once Prolia is stopped, the osteoclasts were not being destroyed but have become inactive. They then actual go into overdrive and weaken the bones faster than before, which results in weaker bones and making fractures easier to happen. It also known that the docs know the research and are hoping new drugs will come to counter that process. I am due in a few months to get a new bone scan. I have had three rounds of Prolia. My Uro said I could stop Prolia if the scan is good. I already had osteoporosis before starting Prolia. I guess he didn’t keep up to date. The new research says to just supplement with calcium and stick to a good diet and exercise.
IMO, I would say the best solution is to not start Prolia to begin with, or once on Prolia don’t stop until a new drug is found. At all costs don’t fall down. My best to you.
Jack
Posted 8/4/2023 5:44 AM (GMT -5)
I have osteopenia as well. At first I was prescribed Alendronate (70mg 1x week) and it seemed to work fine. As I understand it your bones don't recover what density they've lost because of your medication, the meds simply stop or radically reduce its progress. Anyway after a year or so on the Alendronate my PCP suggested I try Prolia which was one injection twice a year and beat remembering to take the pill every week. Then, Prolia upped its cost that neither my supplemental insurance nor Medicare would cover. (I believe it was $1500 a pop.). So, I'm back on Alendronate and no bone density loss at all.
Posted 8/4/2023 8:07 AM (GMT -5)

Tico14 said...
I have osteopenia as well. At first I was prescribed Alendronate (70mg 1x week) and it seemed to work fine. As I understand it your bones don't recover what density they've lost because of your medication, the meds simply stop or radically reduce its progress. Anyway after a year or so on the Alendronate my PCP suggested I try Prolia which was one injection twice a year and beat remembering to take the pill every week. Then, Prolia upped its cost that neither my supplemental insurance nor Medicare would cover. (I believe it was $1500 a pop.). So, I'm back on Alendronate and no bone density loss at all.

I was started on weekly alendronate also and had a slight improvement at my first bone-density scan after 2 years.

Djin
Posted 8/4/2023 10:14 AM (GMT -5)
Those of you taking Alendronate have more than likely made the right choice. From what I can gather there have been no adverse effects when stopping it. For those of us on Prolia, there are few drugs that can be started to possibly counteract the rapid decline of bone loss when stopping. However research is mixed on which drugs work, but they need to be started very quickly after stopping. The research on Prolia and bone loss was cited back in 2017, yet doctors didn’t believe it and continued to prescribe the injections. This is one time I wished I had gone with my gut feeling to just add more Calcium and let the aging process proceed naturally. My best wishes to all.
Jack
Posted 8/5/2023 3:45 PM (GMT -5)
Prolia is a dream drug from a pharmaceutical industry viewpoint since discontinuing it can have severe consequences for the patient. Moreover, Prolia must be quite profitable (for Amgen).
On the other hand, assuming my doctor recommends that I start on Prolia, I would accept the fact that I would have to take it for many years, maybe until I pass on. In other words, I would not be too concerned about discontinuing the drug. Nevertheless, if I had to stop, taking alendronate (Fosamax) for two years may be an acceptable compromise. I emphasize though that this drug has to be taken a certain way to prevent serious side effects.

With respect to compiler's original question, I think one would want to see an improvement or at least no further deterioration after a year or so. Note that not all skeletal T scores might improve or stabilize. At least that was the case for me.

More in general (an excellent review IMHO),

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc9081316/#:~:text=high%2dfracture%2drisk%20individuals%20are,use%20if%20denosumab%20is%20stopped.

Post Edited (Sr Sailor) : 8/5/2023 12:52:30 PM (GMT-8)

Posted 9/5/2023 9:05 PM (GMT -5)
A bit late to this thread, but I thought it worth sharing my history with bone density, Prolia, and estrogen.

After 18 months on ADT2 (Lupron and bicalutamide) as part of primary treatment, my bone density dropped from normal to almost osteoporosis (T score down to -2.3). That's a lot faster than I'd been led to believe it could happen.

I went on Prolia, after a "dental clearance letter" confirmed no anticipated jaw-compromising issues. Necrosis of the jaw is a real, and difficult, possible side effect. The loss of bone density apparently was stopped.

After about 2 years, we quit it when my ADT ended. That was spring 2016, though no one then had much data on what happened after it was discontinued. My bone density was monitored by DEXA scan every 2 years after. It very slowly improved, never declining.

In 2019, I restarted ADT, continuous, for the long term. In late 2019, I also started estradiol patches (the active part of estrogen). That stopped most of the miserable side effects of having no testosterone, hot flashes, fatigue, brain fog, and the like. But importantly it also had the desired effect of protecting bone density. In fact, about a year ago my latest DEXA scan confirmed that my bone density has finally become NORMAL again!

Estradiol patches are surprisingly (to me anyway) rarely considered for this issue (and the rest of ADT symptoms). I get that the gyno risk is intolerable to some, but for me it was FAR better than the risk of a nasty bone fracture. Of course as always, YMMV.
Posted 9/8/2023 5:57 AM (GMT -5)
Jerry, great info. Renowned, and now retired, PCa oncologist Dr. snuffy Myers routinely used estradiol patches for men on ADT for the same reasons.
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