Osteonecrosis

That sounds awful.  I hope her team get on it quick.

I’m afraid I don’t know much about osteonecrosis but I have experience of Denosumab.  I hope your team have informed you that she has to relay off denosumab with a relay drug? Not doing so can result in spontaneous vertebral fractures. Usually a bisphosphonate is prescribed, but if she has osteonecrosis the drug type she should be given is a SERM.  It should be started at the point her next injection is due.  

Good luck

Lee

Thank you Lee.

I did include reference to where you can find more info on Denosumab and its side effects (including osteonecrosis) but apparently this is not allowed here.  Let me know if you’d like me to DM you?  x

Thank you Lee

 We have an appointment with an orthodontic consultant who specialises in the condition so will hopefully find some help.

I had ONJ at the beginning of the year, also due to denosumab, but was lucky and didn't have any pain. The advice I got was to let the bone detach by itself, which it did, and then remove it. Other than stopping denosumab, there doesn't seem to be any other treatment from what I was told.

But if she's still in pain, I would suggest she sees a specialist oral surgeon. It may be that she has a channel to the sinus, which is common. Because I let mine in place for quite a while, it is very narrow and doesn't cause me issues.

Thank you. Lorraine is in a wait and see situation. She's had a couple of infections which were successfully treated with antibiotics. When not infected she is in what she describes as manageable discomfort. Her orthodontist has said that surgery is not an option