I have osteonecrosis of the jaw.
I started with Forteo years ago(in my 50’s), then I had Reclast infusions
For many more years, and finally the last few years I had Prolia injections. I am 75 years old, and have now been diagnosed with Osteonecrosis of the jaw. Does anyone else have this diagnosis, and if so, what treatments have you had? I am being checked every 6 months by University of Florida health Dentists, with (a watch and see approach). My Rheumatologist wants me to start Tolos.
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@clj9821
My attitude comes from several places. 1. My father has a devastating stroke when he was 46 but ĺearned to talk, eat, write, walk again until 40 years later when he has mini strokes and had to wear a diaper. Then, he quit. My mother, by contrast, was depressed and lived alone without exercise, hobbies, dietary adjustments, or goals. She died at 98, suffering dementia.
2. I have goals to accomplish, 6 grandkids, a sweet 6 lb granddog, work 3 days a week at a physically active job to stay as strong as possible. My husband needs my support as well. When I am busy, not much bothers me. I use the internet to shop even for medical items and experiment with items that can help me. They often do. I have several great dentists who encourage me as well. My life is more structured but remains fulfilling in many ways. Thanks for your best wishes. I hope you're able to travel your health journey with success.
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2 Reactions@drummergirl
If you do the research, you will find that Fosamax is known to have a potential effect on your teeth as well as femur bone potential fractures. In fact, years ago, I worked with a woman who lost several teeth after being on Fosamax. At that time, there were few fewer medication options available. Tymlos is one that is supposed to avoid that Dental problem, at least that is what the published information indicates. Tymlos comes with its own side effects so that all of the medications have potential problems
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1 Reaction@rashida Looking down can sometimes help. I also open supplement when I can. Some of the largest capsules I've seen have been calcium supplements. Now I try to use powdered calcium citrate. Years ago I also found a liquid form of calcium.
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1 Reaction@willowmena
I am a researcher. I have not seen anything suggesting that tymlos is exempt from the teeth and femur issues, but I will certainly look further. None of these drugs is without significant issues.
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3 Reactions@prarysky Looking down (or with head down) to swallow has worked for me every time.
It is recommended generally that capsules be taken whole and not opened. Powdered and liquid form are fine when they are formulated as such but capsules have always been recommended taken whole.
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2 Reactions@bruceandruth1970
I don't have any info that the heightened jaw osteoncresosis threat is known to persist after the patient stops taking the bone growth drugs. But I did make the inference that OP had once been taking bone growth drugs, had (presumably) stopped, but was latter diagnosed with jaw osteonecrosis anyway.
Maybe I misread OP's comment. Either way, I am interested in knowing about jaw osteonecrosis threats, empirically proven and anacdotal. I recently began bone growth meds myself, so I'm just learning the good and the not-so-good.
@pyates
my friend who has never taken osteoporosis medications, & has history of osteoporosis, found out from her dentist that she does have ONJ. She thought she had something stuck in gum area between her teeth & upon exam was told this was part of osteonecrosis of her jaw.
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1 Reaction@dtevis
Interesting. Do her doctors know what caused the ONJ, given that she's never taken osteoporosis meds?
So far, I've never heard that osteoporosis, by itself, can cause ONJ. So my thinking's based on assumptions, not facts.
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3 ReactionsI have trouble swallowing even smaller pills than calcium. I found that swallowing them with a carbonated beverage does the trick. Works every time for me.
@pyates
She said just having osteoporosis can contribute to ONJ. Our bone metabolism is different with osteoporosis and perhaps the thinning bones contributed to ONJ. I have been told my teeth roots are not anchored quite as good due to my osteoporosis though I do not have ONJ.