Osteonecrosis

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My wife Lorraine has stage 4 RCC. One of the medications that she was taking was Denusomab.  Unfortunately she has developed osteonecrosis in her jaw and is no longer taking the drug. She has had two back teeth removed. Since then she is suffering quite severe pain and treats it with codeine phosphate and occasionally oramorph. 

I was wandering if anyone on this forum has any experience of dealing with the condition, options for treatment and anything else that might improve Lorraine's condition. 

  • 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

  • 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.