Confused About Prolia: OK, my bone... - Advanced Prostate...

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Confused About Prolia

compiler profile image
13 Replies

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

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compiler
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13 Replies
Magnus1964 profile image
Magnus1964

I have been on xgeva for 5 years, no SE.

MateoBeach profile image
MateoBeach

You have advanced prostate cancer that is probably not curable. Already one met to bone. Others likely in the future (for all of us). 90% at end stage PC have bone mets and bone pain and fractures. So what can you do now to minimize that for the future? Prolia is a good choice. Might also slow down forming new bone mets. Then there is the near osteoporosis and being on ADT, even intermittently. Don't fear the prolia side effects, fear your osteoporosis and metastatic PC. And by the way, get that one site treated by SBRT to try to stay ahead of it. It is easy to do. Sorry if I am too blunt.

Break60 profile image
Break60 in reply toMateoBeach

Consider switching to estradiol patches from Lupron; easier on bones and cardiac . The only downside is man boobs but who cares? I’ve been using the patches since ‘19: three .1mg patches changed weekly.

Grandpa4 profile image
Grandpa4

the drug works to prevent fracture rapidly. The mechanism for preventing fractures is that it prevents weak areas in the bone created by resorption. The increase in bone density is slower. When you stop Prolia you need to take Fosamax for a year to prevent a major drop in bone density and fractures.Femoral fractures can be a side effects of long term Prolia. They are much less like than hip fracture without treatment. They are also much easier tobtreat.

michael00 profile image
michael00

My bone density was osteopenia so they gave me Prolia for 2 years. At that point bone density measured in normal range. After 1 year off it I was back to osteopenia. Been off it 2 years now and starting Fosamax. I had no side effects from Proli, but it gave a good result

Explorer08 profile image
Explorer08

You might consider consulting with an endocrinologist who deals with osteoporosis. My wife’s endocrinologist has her on a course of Tymlos rather than Prolia. Prolia caused her to have loose teeth.

Also, my wife started with Osteostrong where she purchases the supplement AlgaeCal. We’ll see if it helps. Not sure, yet.

Exrunner profile image
Exrunner

ADT reduces your testosterone, which in turn reduces your Estradiol. Low Estradiol leads to rapid bone loss. You could ask your doctor to prescribe the Estradiol patch to bring your levels back in to range that prevents bone loss. You could also take a supplement that helps restore bone loss/health and include weight bearing exercises that will help with bone density.

NotDFL profile image
NotDFL

It's complicated.

What's not complicated is that weight bearing exercises help. This includes walking. No side effects!

carbide profile image
carbide

There is also a 3% chance of osteonecrosis of the jaw, but may affect other joints/bone. I add this comment, as I got osteonecrosis from

Xgeva ; prolias cousins.

j-o-h-n profile image
j-o-h-n

Not to worry, does not affect boners............(smoke em if you got em)....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/05/2023 2:51 PM DST

Jewelrylady profile image
Jewelrylady

my husband recently got first Prolia injection. He has had no side effects. I have a friend who has been on Prolia for four years and she has had no side effects.

compiler profile image
compiler

Thanks for your responses. It's been 1 month (almost). So far, no SE noticeable.

Mel

marceen profile image
marceen

read or search for class actions against amgen (Prolia) and Fosamax. Yes, the data (nih journal articles, etc) mentions the areas that break (upon a very light hit - perhaps like walking by a table) The jaw bones and the femor are the most likely as I remember. No I do not take prolia and the documents support my choice.......sudden discontinuance is dangerous.

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