Connect
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
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
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!
-
Like -
Helpful -
Hug
1 Reaction