Prolia treatment for osteoporosis: What is your experience?

@callalloo and others - here’s something I read today.

Great catch, thanks for sharing it. It fits with what the NPR reporter wrote and how Merck gave X-ray machines to clinics and doctors' office, or interest-free loans to buy them, so more women could be screened for 'osteoporosis.' And the number that would make someone osteoporotic was a coin toss. Then someone said let's make up a name for people who were close to that number and the diagnosis of osteopenia was invented. Not that bone loss isn't really serious as it is, but the arbitrary numbers and diagnosis bother me. We've spent decades looking at pictures of bone with, as far as I'm concerned, insufficient attention to health and quality of that living tissue. Hopefully, that'll change with some of the newer drugs but the whole saga reminds me of the skyscraper in San Francisco going further atilt because the underlying structure is the problem.

I'll just put my whole take on this article and others like it here in one place. I have had osteoporosis for 15 years. There are things I agree with here, and things I don't agree with. You have to understand that articles like this are manipulating just as much as the drug companies. Be skeptical of everyone.

The argument that bone loss is "natural" has some flaws, because we now live into our 90's, in many cases. Women used to die closer to menopause and so osteoporosis was not an issue. Though the image of the "hag" or "crone" bent over was the image of osteoporosis and you still see women like that today.

I would not medicate osteopenia. Most doctors are not doing that anymore. The whole movement to do that was absurd and harmful. First line drugs built density but over time could result in brittle bones, resulting in atypical fractures and even necrosis of the jaw- the latter very very rare and mostly due to higher doses for cancer patients. The further problem with Prolia is that bone loss accelerated when stopped so once you start Prolia, you are kind of locked into meds to follow- though perhaps a biphosphonate could "lock in" the gains.

Insurance covers biphosphonates and Prolia first and once you fail those, have severe osteoporosis, or fractures (or some combo of these) you can take bone growing drugs like Forteo, Tymlos or Evenity. This is backwards. Bone growing drugs should be first, but they cost money. Some doctors will apparently help advocate for these.

Okay so for early osteoporosis, say -2.5 to -2.9, things are murky. During that time I read Keith McCormick's book "The Whole Body Approach to Osteoporosis" and also a book entitled "The Myth of Osteoporosis" and others. I have been reading for years. I also did tai chi for years. I had 2 spinal compression fractures from a fall and was told my spine was more fragile as a result. I tried Fosamax and failed (GERD). I tried Forteo and my heart went crazy. I went to an immunologist to try to get desensitized. I wanted drugs but was also scared and sensitive to them.

I got breast cancer. This contradicts the linked article by the way. My bone density was well below -3.0 at that time so according to the article I should have been protected! I took aromatase inhibitors. (For me these were potentially life-saving. Others with low risk or low estrogen scores may decide differently.)

I began an aromatase inhibitor already with pretty bad osteoporosis. My oncologist wanted me on Reclast but my bone doctor said no due to my afib, and didn't want Prolia. I couldn't take Forteo. We assumed Tymlos would also be impossible. I tried to get on a trial of the patch, thinking maybe I could handle that. My bones got 5% worse the first year on Femara, then settled to a 2.5% loss, the same rate as before Femara ever since menopause.

I went off Femara at 5 years due to bone issues, at the request of my oncologist. I wanted 7 years. At that point I was doing sword tai chi and feeling strong and athletic.

I went to a hospital for my COVID vaccine and didn't want to use the rest room. I brought a pot in the car. I lifted my behind up to get on the pot and felt something tear. Three spinal fractures in one moment.

The pain is indescribable. My independence was threatened. Instant old age. Trouble doing laundry, doing dishes, cooking, shopping. THIS is what all the hooplah is about. Granted, if I had not made that one stupid movement, maybe I could have gone longer. But a cough, a hug, opening a window, something would have happened. I was getting close to -4.0 and that decline happens fast after menopause.

Another effect of fractures is that the spine is shorter, making less room for organs. I cannot eat much at a time, and there are potential breathing issues. Osteoporosis really is a serious problem.

My Vitamin D level is 52, excellent, I take Vitamin K, adequate calcium, walk every day, and do tai chi. But now I am in pain forever. People say they don't want to take meds so their life is "normal." Well my life is not.

I am now on Tymlos. I fought to be on it. I started at 1/2 dose and landed in the ER with afib, just like Forteo. I cannot connect the afib and Tymlos: could be coincidence. I met with two cardiologists and two endos (mine was out of the country). I told the Tymlos folks and my docs that I was starting at two clicks out of 8 on the pen. Over a few months I have moved up and take 7 clicks most days. I also switched to the morning.

I will do ANYTHING to stay on Tymlos. I don't care if I go bald or have to spend hours in bed or whatever. Yes it has side effects. I wish I had taken it earlier. People DO go from severe osteoporosis back to osteopenia on these drugs. My doc will follow up with either Evenity (depending on progress) or 1/4 dose Reclast administered slowly after drinking lots of water and medicating. He will monitor me and add or take away drugs as appropriate.

The whole reason for this problem- osteoporosis- is that we live longer. Yes it is natural but it is also crippling. If severe enough.

If you have osteopenia or mild osteoporosis, I suggest buying McCormick's book and try to maintain what you have. McCormick himself took meds for a while but since has followed a "whole body approach." If your bone loss progresses or if you are already at the point where fracture risk is high, please please consider medications. And try to find a doctor who will start you off with bone growing drugs.

Evenity grows bones but also affects resorption/turnover the way Prolia and biphosphonates do. As a result it "turbocharges
bone growth but may possible have some of the bone quality issues of the other drugs. Tymlos and Forteo grown bone but retain turnover.

I have a kid with multiple health conditions and am caregiving my mother, as well as myself. I have prevented harm from doctors in sooooo many cases so I am not naive, believe me. But osteoporosis puts us between a rock and hard place. I thank the stars for Big Pharma who made insulin and anti-epileptics for my kid, Tymlos and Femara for me, and heart meds for my mother who has made it to 95. Yes they are geared to making money. But capitalism fuels drug development and many medications that result, prolong life and prevent suffering.

I totally agree with reading anything with really both an open mind and skepticism.
Take what seems to make sense, given everything else you know, discard the rest, and try to create a sensible program that works personally.

And yes we're living longer and maybe some organs or body parts don't have the same shelf life as others. When I was bemoaning the Bad News Biopsy, a sardonic-but-hilarious friend said, 'Just think about it this way. If you'd died two years ago, you would have been cancer-free. You just lived too longer."

I think that article and you are likely in agreement that osteopenia may be being over treated. I'm going to read the books you and others have mentioned and do everything I can toward maintaining bone health as long as possible. I don't know that I can prevent osteoporosis but I met a woman the other day who's 86 and had mild osteopenia 20 years ago and still does. She did change her diet a lot and added cycles if weught-bearing exercises that also strengthened her balance. But it was encouraging to listen to her experience.

And, in the meantime, smarter drugs are coming along, including the ones you mentioned that actually grow new bone.

Below is a quote from an article re: a study in the Journal of Bone and Mineral Research suggesting that Prolia is associated with a higher incidence of osteonecrosis of the jaw than bisphosphonates.

What I found interesting is the review of it by a doctor which follows the article. He thinks that osteonecrosis is a misnomer:

"I believe that the term “osteonecrosis” is incorrect. If the bone gets infected, it is osteomyelitis and necrotic. Nuclear medicine scans of exposed bone in non-infected patients with “osteonecrosis of the jaw” show increased uptake. “Necrosis” implies “dead bone,” which should not be taking up radioisotope."

Had yesterday afternoon. At about 11 the next day I got muscle aches chills fatigue and we could headache still not feeling well at the end of the day. Took Tylenol which helped and will take more tonight. Hope this doesn’t last too long.

I cannot speak from experience but reading about Reclast, this seems to happen to many patients after the infusion. But it does go away. Feel better soon.

Thank you! 😍

What is the incidence of this happening - the rebound? Is it 1 in 500, is it 1 in 1000, is it 1 in a million?
Does anyone have this answer??

I've lost track of the source of my statement about the rebound effect. If I find it, I'll post. When I searched for "prolia rebound effect" today, I got many articles discussing fractures that occurred after discontinuing Prolia after several years of using it. This is quite different from what I understood "rebound effect" to be. What I thought I had read was that it could appear out of the blue while still on Prolia. In any event, all the information I could find on any of the side effects simply classified them as "most common," "less common," "rare," etc.