I have osteonecrosis of the jaw.

@laura1970
I first noticed the spot in my mouth, I felt it, I can’t really see it, as it is on the inside in the back. My regular Dentist sent me to a local oral surgeon, who was not sure. I then saw someone else who definitely diagnosed me and sent me to a teaching hospital in Jacksonville FL. I live about 2 hours away in a much smaller town. But I would go anywhere to stop the progression.
There was some discomfort in the area, but not a lot. For some reason, now, I have no discomfort. I’m just being checked every 6 months and doing the rinses.
And of course, I have stopped all Osteoporosis meds.
MLG

@laura1970 I don’t know if bisphosphonates also cause a osteo necrosis of the jaw. I have only heard about Prolia. I took Actonel and Didrocal for several years and didn’t have any problems. I stopped Prolia after just one injection because my body ached more than usual. I have fibromyalgia so I am used to pain but this was worse. Was back to normal pain after stopping Prolia.

It was after I stopped taking Prolia that I read stories about jaw necrosis as a side effect! I am back on Actonel, but this time I am taking it once a month instead of weekly. So far, no side effects except I have to be careful to drink a whole glass of water with it, and remember not to bend or lie down for at least an hour after taking it, to prevent severe heartburn.

@mlg23 thanks!

@laura1970

I'm in exactly your situation, as I began taking Evenity three months ago. I always assumed osteonecrosis of the jaw was possible only while the patient underwent their 12 months of treatment, and not afterwards.

Now, if I understand correctly, the osteonecrosis threat is permanent, persisting even after the person stops taking the drug?

That's concerning, to say the least.

@laura1970
They all do from what I have read. But I have also read that the injectables are more likely to cause it.
All those drugs terrify me, but just doing fosamax right now.

@drummergirl thanks. That is what I was afraid of

@pyates agreed!

@pyates Would you please let me know what you read that shows it is permanent.
Thank you.

Wait...osteonecrosis as a possible side effect of some osteoporosis meds can happen while not on the drug?? If true that may have been good information for the doctor to share so that the patient can make a truly educated choice! Wow again although I am following doctors orders (although not happy about it even with very little side effects) why in the world are we not given complete information...even web sites to look up, or handouts (I got one on Reclast AFTER the infusion at the chemo center). Sheesh.

@prarysky and @mOh1pp I have difficulty swallowing sometimes, and always with large pills. I find looking down as I swallow helps get food or pills down.