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Anyone had ONJ while on a bisphosphonate?
Docs tell us that bisphosphonates only rarely cause ONJ. So I was wondering if anyone on this forum has gotten ONJ as a result of being on a bisphosphonate for osteoporosis (not for cancer). Might be helpful to have our own survey, since so many of us are scared of taking the drug. Also, if you did get ONJ, how was it treated, what was the experience like, and are you all healed now?
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@broken13 -- May I ask how severe your ONJ was? Did it heal? What was the treatment?
Yes, I’m taking low dose estrogen. Menostar is the name of a low dose patch ( 14 mcg) and prescribed for women who can’t tolerate other osteoporosis drugs. I am considering going to a compounded pharmacy for this same dosage in a topical cream form. The patch is a dot size and is changed weekly. I’ve managed to maintain bone, but have had osteoporosis since my early 50’s. Like most women with thinning bones, I take calcium, exercise and try to avoid stress. Stress related cortisol is like battery acid on our bones. I wish I had known the role of stress hormones earlier in my life. Knowledge is power.
ONJ was very severe with loss of many teeth, bone infection, antibiotic infusions for months, hyperbaric oxygen therapy for 2 months (5 days weekly). And several deep bone jaw bone debridement surgeries. It was miserable and expensive for years. I am grateful to be on the other side. I still have deep bone pain, but no infection. Bone infections are notoriously difficult to treat. Blessed, didn’t give up. This is my story only and others have no problems with bone saving infusions and pills. Hope this answers your questions.
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1 ReactionI am so sorry to hear this, @shelnadine. What an ordeal you went through.
The pain was very severe. I just wanted the tooth pulled and went to the dentist several times and he could find nothing wrong with it. They finally ordered Bone Scan and concluded Osteoradionecrosis . There was intense radiopharmaceutical uptake in the right maxilla. I lost two molars, but did recover and my remaining teeth stabilized. Forteo helps heal the jaw and I was only 5 months since taking that, and they tell me that is what helped me heal.
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2 Reactions@broken13 So sorry for all you went through. Must have been awful. But of course very glad you recovered. Sounds like you have no pain now. It is interesting that the anabolic Forteo helped the healing. Good to know.
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1 ReactionHow many years were you on Fosamax before you took Actonal? I a so sorry for your pain and suffering. Thanks.