Doctors Reprimand Me For No Osteo Meds

@njx58

And one among many reasons we need to do our own research. Not every doctor is trained and/or experienced in treating osteoporosis. And that is exactly why we need to do our due diligence and find the right doctor for the job.
It would be folly to expect each doctor to know everything.

@ragdee I am so freaked out about osteoporosis meds. I'm not on them. I 've had 5 pelvic and 2 femur Fx's and multiple compression Fx's in my spine. I Also have chronic Fx's in my 3rd lumbar vertebrae. . I got osteomyelitis and have to take doxycycline twice daily for the rest of my life per my infectious disease doc. I' ve had 6 surgeries in my left leg and have been under general anesthesia 9 times in a year and 7 month period. My PCP told me that there are over 100 health problems on my Health Conditions list. I need to re-learn about osteoporosis meds bc I've been through so much I've forgotten everything I learned about them about 8-10 years ago. I just recall my dentist telling me not to take allendronate bc it could cause osteonecrosis of the jaw. Another can cause a cancerous tumor in the thigh. I declined many of my endocrinologists wanting me to take them over the years. Are there two functions the meds should do ideally? Remove old bone and stimulate new bone growth? One of my docs said it doesn't matter that you grow new bone bc it will still have holes in it! I declined the meds bc of what osteoporosis patients around the world here on the blog said about their experiences! May God richly bless you all, Sunnyflower

@sunnyflower I too was resistant to taking an osteoporosis drug because of all the horror stories I heard about side effects. But after a pelvic fracture I knew I had to do something- diet and exercise alone didn’t do it for me. After much research I decided on Tymlos because of the reported good results and comparatively mild side effects. I am very happy that I did. After 19 months (recently) I experienced much improvement in bone density. When I finish the 24 months I hope to find it even better. Good luck!

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.

All,

After about 15 years and three rheumatologists, I asked for an appointment with the only doc left in my area who accepts OP patients - and to get an appointment, I was put through a questionnaire about previous treatments and exactly why I wanted to see this doc. From what I learned, he does not want to see patients for pain management and his staff will inform you of that in the interview. I felt grateful to have an appointment and waited approximately three months to see the Grand Poobah (if you don't know who that is, Dr. Google does, lol).

This doc is very straightforward - he'll tell you what your current situation is and what can (or can't) be done about it, what meds you should (or shouldn't) take, what vitamins/minerals you need and how to get them from foods rather than supplements; the blood work checked all the boxes.

After all this time, I'm happy to say that part of my riddle ("why") may have been solved: I have hypercalciuria (too much calcium is excreted by the kidneys which keeps it from being sent to my bones). A simple little pill daily MAY tell my kidneys to send the much needed calcium back to my frail little bones instead of waving bye bye altogether.

This doc also thought it might be a good time to jump on the Prolia bandwagon. I resisted, yet again, and he set me up to have another Reclast infusion . . . I'm still not regretting the Reclast!

This might be the happy ending we are all looking for: A doc that knows what's going on and one who will listen and allow us to have a say in our treatment. To do nothing is ludicrous. If you had any other lifelong illness, would you not try to see what might help your quality of life all the while extending your life? I do not want to end up in a wheelchair or assisted living because I didn't do everything that I could.

You've seen the drug ads that say. . . side effects . . . may cause "x" . . . and stop taking if . . . That's pretty much what we have come to expect as a society - what cures one malady may cause another.

Meds are not for everybody and if that's what you choose, that's fine, no one should chastise you for your choice. But making a decision on one's own carries so much power.

Do not go gentle into that good night! I'm so sorry for the ramblings, it's been a long, busy week for a landlord in a college town!

The best to you all! Wishing you sunny days!! Cheers!

@oopsiedaisy Ty so much oopsiedaisy (love your ID). Your reply is so very helpful to me, as I have been faced with needing to take Evenity since my Endo was so adamant Sept 2025. As a former Pharma rep, researcher, runner/athlete, I retired early to remove high job stress, upped my bone diet, taking Healthy Bones Co Collegen Peptides, and consistent resistance training to no avail with my DEXA numbers. I am on no meds at 65 and slowly I am recognizing the need for medication even with all the side effects. It breaks my heart, but I was unable to build my own bones back and the reality of the risks is crystal clear. I appreciate your reply. My daughter at 32 decided to leave big corp job to become a Nurse ♥️. So many Nurses have touched my life over the years. Thank you again for sharing.

@beanieone Thank you so much for your great message. Could you tell me the type of doctor, the grand poopah is? (Functional maybe??) Ty so much! 🙏

@bones2024
What will you be going on after Tymlos?

@osteopatient2026
I don’t know yet. None of the options are appealing. Have said no to Prolia. So that pretty much leaves it to a bisphosphonate. Hoping to have a revelation in the next four months. 🤞

@bones2024

if you posted a question about this as a new discussion under Osteoporosis I wonder if you would get more response.

What is your endocrinologist offering as a next step since you do not want Prolia.

If you part of the OsteoBoston group...no cost...you can send an email to the whole group. To join email the group moderator/planner at osteoboston@gmail.com

It is still my understanding that tymlos needs to be followed by an antiresorptive medication like Prolia, reclast or fosomax/alendronate
But others probably have more recent thoughts than I.