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Doctors Reprimand Me For No Osteo Meds
Dear One's, my 1st time back on the blog in years. The block has been an inspiration, encouragement and support to me when I was active on it. I have become more ill over the years with many diseases, one of which is osteoporosis. I've had 7 hip fractures; 5 pelvic, 2 Femur. Ouch! No known trauma. Recently I've had several doctors reprimand me for not being on any osteoporosis medications. They have escalated, raised their voice , shook their heads and all of the above. One of them was a hospital doctor who knows me because of so many hospitalizations, said to me that she has seen me decline quickly in the past few years and can see me in a wheelchair in the near future. It was talking with people on the blog about around the world years ago about their experiences with bisphosphonates, Prolia and other osteoporosis medications, and doing a lot of my own research, that made me decide not to take any medications. I felt it was a quality of life issue because if you take something that lasts for 6 months (that's how I would have to take it because of kidney disease) or 1 year, then any unwanted side effects, would last until the half-life I was afraid of. I just can't take more pain! Has anybody else been treated that way by physicians for not being on osteoporosis medication? My dentist told me not to take I think it might be Alendronate aka Fosamax because she said it can cause osteonecrosis of the jaw. If my understanding is correct, the meds can improve fracture risk but not reverse osteoporosis. I have not looked into the medications in a few years. Maybe there's something new I don't know? My last two bone scans showed improvement with taking 3 mg of boron three times a day. I do take other supplements but know they are not as good as what we need that is found in food. I pray you all may experience the comfort of God and the “Peace of Christ which transcends all human understanding" Philippians 4:7. That is the only thing that gets me through is knowing Him well enough and understanding His purpose in all things and, that this life is so temporary; but a blink of an eye in light of all eternity. Jesus said, I am the Way, the Truth and the Life, no man comes to Me but by the Father." John 14:6 SunnyFlower
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I am very sorry to hear of your experience. Many doctors are quite passionate and ego-centric which does not allow them to consider their patient's viewpoint. I was an RN for many years and observed this with the cardiac surgeons that I worked with. I have recently listened to several podcasts of a health and medical nature that address how doctors can better address their patients' concerns about the treatment plans they are proposing and how to more gently address concerns while communicating the value of the proposed treatment plan.
In the end, we all have to choose our own path and I certainly understand the reluctance of many here to embark on years of medications to which there never seems to be an end.
Unfortunately, there is no "easy button" for addressing osteoporosis. I did a non-medication approach for the first four years but it did not stop my progression into osteoporosis. I listened to my PCP and took a bisphosphonate for over five years. I had no side effects at all yet I still fractured a vertebra by simply bending over a bath tub and pressing down hard on my rib cage.
My father had a similar path as yours with many fractures over the years and loss of strength and mobility. In the early 1980s, it was not thought possible for men to get osteoporosis and DEXA scans were not yet available.
Even after they became available, no doctor ever thought to screen him for osteoporosis because he was a man. He was in a great deal of pain for many years, stooped over, and unable to breathe properly.
I hope to avoid that outcome by doing whatever I can, including taking medication like Evenity which I am doing right now and continuing to use lifestyle to address this defect in my bone metabolism.
I think because I was an RN, I have a balanced view of medical practitioners. I try to listen and make an informed decision. All medications have side effects but we tend to hear about the bad outcomes and not the good outcomes, especially if we are on forums like this and on social media. I've been on four medications to date and my side effects have ranged from none to mild to life-impacting. My most recent medication, Evenity, does have side effects but they are tolerable and I am hopeful it will do some good.
I am sad at the thought that you may continue to deteriorate in the path you have chosen. I am glad that you can take comfort in your scriptures. I believe God would not want us to suffer, though, and perhaps there is a way He can help you try a different path without fear of side effects so you can spend your remaining years in less pain. Godspeed.
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6 ReactionsI had my first Reclast infusion last month. Never again. I was so ill from it for a week. The first night severe chills, headache pain. The following day vomited twice. My joints were all so painful specially my hands. I have osteoarthritis in my fingers and could hardly use them. Had a heating pad on my hands for 4 days. Thank goodness I have my husband to help me. I still have worse pain in my hands than I did and it’s been 2 months. I’ll never take the Reclast again. It was poison for me.
It is possible that the doctor who lost patience with her was the one tasked with repairing the 14th fracture while she does nothing to give him or her bone to work with that will hold screws.
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1 Reaction@oopsiedaisy
Thank you for the thorough explanation!
@oopsiedaisy
Thank you for clarifying.
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1 Reaction@wews
This helped me understand the actions of these drugs. So much to try and understand.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10118815/.
Since you are neither a dog nor a delinquent, your doctors' orders are not commands for you to obey but instead, proposed plans of action. Reprimanding you is therefore inappropriate. You are well within your right to tactfully remind your doctors that you are not comfortable with the potential consequences of the drugs, and that the outcome of their recommendation is for you to decide.
@sunnyflower at least you have no one to blame for the rotten shape your bones are in but you can help them. Biophosphates area first line med for OP and help to rebuild bone structure along with calcium if you’re taking that. Your body has already told you repeatedly that it needs help. Your pathological fractures that you describe (“no trauma”) are due to your bony structures failing you. It will only get worse and as one provider stated you’ll be in a WC eventually. It may not be too late to help yourself, give it a shot!
All medications have side effects but not everyone gets them. Up until a few years ago the prescribing data was not available to the general public. Now that it is don’t dive into the rabbit hole and defeat your well being. Since you like to research find out how many people have been treated with Biophosphates with no side effects. I’m one of them.
@jenatsky Biphosphonates are not "first line med." They are the least effective at building bone. Anabolics are the top meds.
@wews Unlike bisphosphonates such as Alendronate, Fosamax, etc., the anabolic (nothing to do with steroids) treatments do build bone according to medical research sources.
On YouTube you will find a 2025 presentation by Dr. Michael Lewiecki to the Osteoporosis Foundation of New Mexico. The title is "Treat-to-target for osteoporosis" which you can search on. I find that YouTube links in the Mayo discussions get truncated, but I will attempt to put it in here:
Note that this is a detailed scientific/medical talk aimed at other doctors and researchers. I had to pause many times to study the graphs and charts in the talk. But we are each in charge of our own health so it was worth it.
Special thanks to the other forum poster who pointed out this presentation, which I am now passing along!
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