I have osteonecrosis of the jaw.

I’m sorry to hear this 🙁 Can you tell me what your symptoms were? I am getting my 9th Evenity injections and will be starting Reclast after that. All of a sudden I have hip and neck pain. I don’t want more problems. Take care!!

I cannot take those drugs due to cancer and 2 surgeries. The first surgery involved bone replacement and 30 radiation treatments as well as trial chemo. It went well. After the second surgery of partial glossectomy, osteoradionecrosis occurred. The replacement bone was destroyed. I am now on mild antibiotics awaiting a third surgery. Mine is sort of a worst case scenario, but I have been able to deal with weight loss, extreme dry mouth, changes in taste, limited ability to bite or chew, and some swallowing difficulties through trial and error. I work three days a week, and perform all ADLs. I play with grandkids, walk my granddog, cook for my husband. I rest well after very active days.

@m0h1pp What a remarkably awesome woman you are to meet all those challenges! I have my own swallowing challenges for different reasons and it takes a lot of determination to adapt. Keep at it!

Oateonecrosis of the jaw is a big fear of mine. Can you tell what is involved? Pain, functional problems, treatment plans?

To All:
Pleased to find out information regarding osteonecrosis of the jaw (ONJ).
Situation: my wifes' most recent Ga-69 PET scan has shown additional NET bone metastasis including several lesions on her jaw; additionally, she has osteoporosis via DEXA analysis
The medical community is strongly recommending immediately taking Zometa in conjunction with potential PRRT treatment for the cancer.
Given the chance to develop ONJ (some sources state up to 6%) and given the lesions in her jaw, she is very reluctant to start taking Zometa nor other similar drugs.
Anyone with a similar situation and experiences?
Thanks, Mark

@m0h1pp You are a miracle and have an amzing attitude. My problems, adrenal insufficiency aside, seem small in comparison. I know we all have our crosses to bear. I was diagnosed with Interstitial Lung Disease and was on 60mg of Prednisone per day for 9 months before tapering. It's 2 years later and I'm still on it..my bones, eyes, adrenal and pituitary glands, etc have suffered. I'll keep you in my thoughts and pray that you will keep doing what you're doing! WoW! I have a new alter ego..YOU! Bless you! Cynthia

@laura1970 Prolia has been known to cause osteonecrosis of the jaw as a side effect. If you want to avoid this, avoid Prolia!

@rashida I thought bisphosphonates also caused osteonecrosis of jaw. Is there an osteoporosis treatment (besides hormone therapy) that does not have this side effect?

I have been on fosomax for 5 years then changed to prolia after one shot I have bone exposed in my lower jaw. It had been sore before the shot. My oral surgeon said the prolia worsened a problem I had before. Right now I do salt water and an antibiotic mouth wash. It is not sore I go back the end of month. I'm not sure if I wi) continue prolia or probably make a change. I'm on a drug letrozole that removes estrogen. 8 years ago I had recurrent metastatic endometrial cancer but have been in remission 8 years. Will take another year and a half and I know it effects my bones. It is a balancing act. Hope this helps

Thank you all. I had felt alone with this issue. You all are very kind to share your experiences. I also do the rinses and try to keep the area very clean.
Does anyone know of a specialty clinic or hospital that may focus on this issue?
MLG