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Osteonecrosis

Posted by nellita @nellita, Nov 10 8:44am

I have Osteonecrosis of the jaw/palate. I took Prolia 2 shots. Developed alopecia and ostenecrosis . Prior I was on alendronate
Coupled with all the other problems I believe that these drugs might have been the culprit. Maxillofacial dentist are treating me with oral rinses. Very worried about surgery and post op healing. I am very scared. All these bone building drugs should be ban. They cause more harm than good. I am 75 years old. I have two fractures of the spine from a fall about 10 years ago.
and told to continue with bisphosphonates. Than 2024 I took Prolia. I stopped all medications and now live in fear.

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beanieone | @beanieone | Nov 11 6:43pm

@gently,

Thank you for your thoughtful reply.

I tried Actonel (and a couple others) about 15 years ago; it caused some stomach issues so my doc recommended Reclast which, as far as I know, was the only infused or injected med at that time. I’m not really sure why my current doc wouldn’t even let me give it a go. I thought about pressing him about the “why’s” when he messages/calls to discuss my most recent CTX/P1NP results which were not encouraging. Perhaps your analysis of the lasting (or not lasting) effects from Evenity would explain the numbers.

Prolia still scares the bejeepers out of me and I’ve made no - pardon the pun - bones about telling my doc. I’ll try to post soon after I speak with my doc about my next steps.

As always, thanks for your very informative posts!

Cheers!

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beanieone | @beanieone | Nov 11 7:00pm
In reply to @rjd "@beanieone I regretted Prolia almost immediately but not due to side effects....I had none. With a..." + (show)
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@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.

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@rjd,

Thank you for your helpful reply and input. I’m happy you were able to see some good results in a short timeframe with Prolia.

I, too, am afraid of Prolia, but I’m willing to ask my doc about taking 1 or 2 injections and what effect they might have on me. My doc’s opinion is that I/we need to develop a “life management plan” for OP. I plan to live to 100, so that’s a pretty tall order! 🙄

My nutrition and supplements are great, but I know I need to exercise more - probably the more important of the two 🙁.

Cheers!

REPLY
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rjd | @rjd | Nov 12 8:23am

I was certainly relieved that there was enough improvement that the doctor said it was no longer needed. It was potentially my 3rd shot and I had learned a lot more along the way, wanted to go off Prolia, and was dreading what was likely a disagreement with my doctor.

A life management plan sounds quite ambitious given all the treatment variables for this condition. Like everything else, it seems that the best you can do for yourself is to learn about and incorporate targeted nutrition and targeted exercise. And oh yes, either buy a copy or have your library buy a copy of McCormick's Better Bones.....a really good reference book. Best of luck.

Best of luck.

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rjd | @rjd | Nov 13 11:15am
In reply to @gently "@rjd good morning. rjd. My source all these years has been a pathologist devoted to bones...." + (show)
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@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.

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@gently that is a depressing info about how long alendronate stays in the bones.

Can I hope that even though it may be seen to continue an attachment to the bone, it loses its effectiveness (reducing the work of osteoclasts) at an earlier time?

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katwhisperer | @katwhisperer | Nov 19 4:05pm
In reply to @gently "nelita, normally if a person stops Prolia they can't take Forteo (teriparatide) because they have to..." + (show)
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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.

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@gently Prolia certainly does have a lot of bad reports...yet so many doctors are pushing it and I guess some patients do see results?

Sadly, anabolics didn't work for me. My doc said Tymlos and Forteo are the most effective bone builders avail. After 2 full years of Tymlos, virtually no improvement. Minor spine (2 tenths of a point); nothing else. Still in osteoporosis.

Won't touch bisphosphonates due to dental history. Not risking jaw disintegration or that drug in my system if I need dental surgery.

So if weight training, clean eating, no smoking and now taking all the "right" supplements - k2, d3, calcium + 2 years on a powerful bone builder doesn't work, not much left to try. My docs are out of ideas, other than bisphosphonates.

Just going to eat clean, exercise and live whatever time I have left.

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