Osteonecrosis

nelita, I'm very sorry you are having these awful reactions to those medications. Both alendronate and Prolia are implicated in clinical trials for causing hair loss and osteonecrosis.
Is anyone following your risk of rebound with Prolia? You'll be past the most dangerous period at 15months.
Neither Prolia, nor alendronate are bone building drugs, though we add bone with their use.
Forteo is often used to advance healing with osteonecrosis. https://pmc.ncbi.nlm.nih.gov/articles/PMC5806950/.
I hope you heal quickly.

Thank you for your quick response. My endocrinologist said the benefits no longer outweigh the risks
Told me to get off the medication take calcium and vitamin D and be careful in the winter. No details about anything. I am trying to find a specialist in New York that has one of the highest level of expertise to treat osteoporosis. So 15 months is considered the highest degree of fractures or are there other ramifications? My Primary doctor was not helpful either.
Again ,I am so grateful for help.

Nelita,

While you may have low continued risk of fracture from taking Prolia, that you haven't fractured in these months decreases your percentage risk of having one now.
You only had 2 Prolia injections and it is certain that you still have alendronate protecting your bones. Those bisphosphonates (like alendronate) stay in your bones for many years.
I suspect you have walked through the Prolia trap unharmed.
It is almost certain that the combination of the two antiresorptive precipitated the ONJ.
You could ask your PCP or the endocrinologist to order bone marker CTX. If your CTX is low, you could with relief. You might consider Forteo or strontium citrate.
I'm trying to think of a question to ask you, so that you'll keep posting.

I am so grateful for the information. It's a blessing. I will contact my primary immediately. I have 2 existing fractures of the spine. I will take strontium citrate. I was due to take the third Prolia injection late August, but took three alendronate pills instead then stop in mid September. You have given me more than any of the doctor's I have who clearly are not in my corner. Please continue to respond.

nelita,
normally if a person stops Prolia they can't take Forteo (teriparatide) because they have to take a drug that will block the osteoclasts (acid producing cells), usually the strongest--Reclast (zoledronate). Since you aren't taking anything else you would be able to take Forteo https://www.sciencedirect.com/science/article/pii/S1470211824046815
You are probably leery of osteoporosis medications at this point, so I mention strontium citrate.
Your doctor may be unaware of the use of CTX with in treating osteoporosis, but I feel like they owe you at least this test. You can order the test yourself on line. https://www.jasonhealth.com/orders/387917 But then insurance won't pay.
I'm on Forteo and hope to just stay on the drug. And it is the drug I wish every one would try. I'm wary of Prolia thanks to posters like you.

Hi @gently,

It is mostly because of your posts that I have resisted the dreaded Prolia! However, it is my fear, with my latest and greatly
-increased CTX and P1NP scores, that my doc will be wanting to try to “force” me onto the Prolia hamster wheel. I will not go quietly…

I should mention that, post-Tymlos/Evenity, my DEXA showed I had moved into the normal range in my spine, and osteopenia in my hip. My next DEXA is in January, ‘26.

Not sure where to go from here: Efficacy of Reclast may have waned (?) after more infusions than my share, Tymlos was a side-effect sideshow and I’ve taken a full year of Evenity…not sure where that leaves me? I asked about oral meds but my doc said no. Perhaps when I switch docs/insurance companies in January, I’ll find another practitioner out here in the cornfields of PA, who has a new trick up his/her sleeve. My current doc reminded me that “there’s nothing new coming down the pipeline for OP” and practically held my head under water to go the Prolia route.

Thanks to all who are still reading my rant… 🤐. Wishing everyone better bones! Cheers!

@gently
Do you have any information more specific than 'many years' about how long alendronate stays in the bones?
Thanx.

@beanieone

I regretted Prolia almost immediately but not due to side effects....I had none. With a normal spine per DEXA, the problem was with my hips (-2.8) but the doctor scared the hell out of me and there were some other medical issues that were draining my time and energy. So I went along, not knowing much.

After only 2 Prolia shots, my hip DEXA improved from -2.8 to -2.2. I have not ruled out what I now know as DEXA score discrepancies due to technician technique.

You have the luxury of time and experience. Your last DEXA was not that bad. If you have no alternative, you might want to look into only a short treatment with Prolia (1 or 2 infusions) so that rebound is minimized but there could be good results. Even Dr. McCormick seems inclined to consider such an alternative. His book is essential for those of us who are compelled to look into everything related to osteoporosis.

Are you doing all the other things that appear to improve BMD for many people? Like targeted nutrition (thru food and supps) and exercise/movement? These have also shown to be effective.

Best of luck with how you proceed. Your rant is well taken.

@rjd
good morning. rjd.
My source all these years has been a pathologist devoted to bones. I mention him to give you the verbal description which I found interesting. He said that bisphosphonates attach to hydroxiapatite crystals in the bone and not just at the surface. And he said it attaches in clumps. He was convinced that the bisphosphonate remains on bone until the bone around the attachment is degraded enough for it to be dislodged. I'm not sure about this conviction, but have ridden on his earlier statements, until you asked me this morning. https://www.ncbi.nlm.nih.gov/books/NBK554498/.
This pathologist, who is surely in heaven now, said that he has seen bisphosphonation in bone, with delineating a history of bisphosphonate use stopped 20 years before death. He also said that it is easy to detect with the human eye because of the coloration.
One cheerful thing about this site is how the questions stimulate our thinking
I appreciate your question. Thank you in return.
While a portion of the drug is lost during the encounter with the osteoclast, most of the bisphosphonate remains attached to the bone.

@beanieone,
alendronate is a well accepted sequence to Evenity, as is Reclast. Bone acquired from Evenity use is rather quickly lost. Is prior use the doctors' objection to using bisphosphonates at this time?
When we quit gaining as much (or much) bone from the use of bisphosphonates, we think they have quit working, but the bisphosphonate doesn't quit attaching to the bone, we've just stopped the avalanche of loss. The hazard of continued use is that it hangs on to fissured bone, and the bone we save becomes more brittle.
You now have all this Evenity bone that doesn't have any bisphosphonate attached. Plus you ( though your suffering) have all this protected Tymlos-bone ( the best bone) underneath.
It should be fairly easy to find a cornfield-PCP to prescribe alendronate.
The transition from Evenity to Prolia is heavily marketed to our doctors by Amgen. I think that the sequence is successful for more patients that is fails. So there is the possiblility even likelhood that Prolia would work. I'm somewhat attracted by rjd's suggestion of a single injection. Still, I wouldn't risk it. That post was too informative and mostly tooo short to be a rant. Thanks for the blessing.