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Apr 21, 2018 12:18AM
Hello to all Prolia users and former users! A few composite comments in a mini-treatise below:
- We unfortunately do not have perfect drugs without any side effect risk for women with osteoporosis (OP) without BC, (usual rx is bisphosphonates or low dose denosumab, trade name Prolia), for prevention of osteopenia progressing to OP with BC and anti-estrogen therapy (low dose Prolia 60mg every six months), or for BC treatment with bone mets (high dose denosumab at frequent intervals, Xgeva) .
I was put on Prolia not just for my OP (previously on bisphosphonates many years) but for lowering future BC recurrence in bones. Most women, like me and many I know ( and men who get it for prostate cancer) have no major side effects, if any.
It may not be worth risking rare side effects for some women in their own risk to benefit calculus, but I look to reports such as this one showing lower BC bone recurrence in post-menopausal women to encourage me to continue it.
I have also had regular osteoporotic fractures, including at the hip, and they are no more fun than fractures from atypical femur fractures, ( I had one year of suffering), and a lot more common, so that is my relevant comparison if I do nothing. I will risk a rare atypical fracture to prevent the more common other fractures, as there are no good risk-free alternatives ( bisphosphonates can also cause problems with atypical fractures and ONJ). Nothing, no rx, is not an acceptable alternative for me given the stats.
2. As for osteonecrosis of the jaw, ONJ, with Prolia, most people do not get it, so I can think of way scarier drugs to take for oral health, with all respect to dental hygienist daughters. Without cancer, reported risk is .01-.03% and with cancer (often with chemo or steroids or other factors that enhance risk including major dental procedures, and including those on high dosing) it is 1-2%.
If a dental procedure is needed, such as abscess drainage, an informed oral surgeon will do it (I know not all are informed or just worry about law suits and have enough business without risking it) even if someone is on denosumab, as the risk of an undrained abscess outweighs the rare risk of ONJ. American Dental Association agrees.
3. Let us not forget that rare atypical femur fractures occur in many people not on Prolia or bisphosphonates, though exact population incidence is not known, but they are certainly more common statistically with Prolia. On an absolute level, however, there is is just a handful of reported cases in a drug that has been out over ten years, (FREEDOM trial of thousands of patients summarized a lot of what we know about Prolia, had only two cases), and reports are confounded by prior bisphosphonate therapy in some. They are so rare that if they happen, they should be written up, perhaps BCO patients who had them, if clear, should urge their docs to do so!
This review article article from 2017 claims there are no reported cases of documented atypical femur fractures in cancer patients treated for osteoporosis, and only one who was treated for mets (of course not everything is reported or written up)
4. For any individual, the question is risk vs. benefit, balanced against uncertainty. Nothing is not always a great alternative. Prolia clearly lowers risk of common fractures of spine and hip, and likely lowers BC recurrence in bones, so I will take it ( for now).
For ONJ risk minimization, I go to the dentist three times a year to keep my teeth good, avoid dental implants, do not smoke, and minimize my steroids as best I can. I also run back to the dentist at the first sign of infection to avoid an abscess, she is used to it. :)
For atypical fracture prevention, which can be bilateral BTW, I watch out for new groin or hip pain, and for fragility fracture prevention I avoid activities likely to lead to falls, keep my 25-OH D level robust, and take calcium and vitamins.
The rest is up to fate, absent new research that will change my choices.
I say this as someone who has had rare, weird and freakish serious reactions to some procedures and drugs, and rare presentations of rare diseases ( other than my BC which has been mostly mainstream) , so I know they happen, and that not everything is published or known, and my sympathies go out to all who suffer rare or other side effects.
I suggest we keep things balanced, compare frequency of symptoms we get and attribute to drugs with symptoms people on placebo, and be vigilant, but keep perspective. I have known side effects from my Arimidex and other meds, but right now I am pretty sure I should take them.
After a decade of autoimmune problems, Dx 10/2017 at age 63, IDC, Left, 9mm, Oncotype 13, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2-, 11/22/2017 Lumpectomy, Arimidex. Declined radiation.