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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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@njx58 Yes, that doctor knows nothing about how the osteoporosis drugs work. The new bone built is actually a lot stronger than existing bone with the same BMD. They have done finite element analysis to test the strength of the new bone. The results from large patient studies have found that Tymlos results in a 86% decrease in fractures. Taking traditional bisphosphonates results in a 30-50% decrease in fractures. These drugs took many decades of work to develop (since the 1970's) . We are so lucky to have them available to us. I am so grateful to medical science!
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3 ReactionsThere are Forteo and Tymlos threads on here you can check in with and ask for YouTube channels, etc about these meds. They build bone and do not cause necrosis of the jaw. That said, you need a doc that understands your health issues and works with bone meds. It sounds like you do not have that yet.
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1 Reaction@zhaner
https://connect.mayoclinic.org/search/
@sunnyflower
I understand your frustration. I’m in the same situation. No matter how much we educate ourselves there will always be side effects for sum. I’m like u waiting for the last minute to do something
Thank you for your post
@sunnyflower So sorry to hear about your numerous fractures and your fear of bone meds. Yes there are some of us who experience reactions to the meds and some of us who don’t. There are still many of us who have had no serious reactions. I have taken Evenity with very little reaction. None with Prolia and Reclast.
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1 Reaction@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!
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2 Reactions@rose140 To be totally frank with you, please don't wait so long that you fracture first. Many people to not start these meds until they fracture. If you break a hip, or have a "non-silent" vertebrae fracture, you will never feel the same again. My doctor said that every non-medicated patient (she has met) who fractures regrets not taking the osteoporosis meds sooner. Most people who take these medications do not experience side-effects. I have been taking Tymlos for 14 months with no side effects. I give myself a shot every morning. After 12 months my spinal bone density improved by more than 10%, taking from severe osteoporosis to borderline osteopenia/osteoporosis. Before starting Tymlos, I was deathly afraid of needles. Well, a nurse showed me how and I sucked it up and just learned to give myself these shots every morning. The needle is very short, and fine. Sometimes I do not feel it at all, sometimes I feel a little prick, sometimes it hurts a tad more. No big deal. It is better than fracturing my spine! I also have a lot of the sensitivities others have mentioned - sensitive to meds, thin (not a lot of body fat), etc.... I hope you choose wisely, and don't wait to start until you have fractured.
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2 Reactions@roseincalifornia
Love what you have written here . To the point and delightfully pragmatic.
Just to add another positive about meds. I have taken alendronate for 5 years. Forteo for 2, evenity for 1, Prolia for
1 1/2 years. No noticeable side effects with any.
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1 ReactionThank you both for your support. Just don’t know which med to use. Went to 2 different doctors each one suggested something different
I hear once u stop one u have to start another. Some cause a a fracture.
I guess I’ll have to educate myself on all the medications out there
Thank you again
@sunnyflower : I have the utmost respect for your beliefs. We all have firm beliefs about some, or many aspects of life, and even the medical profession. What I find difficult to understand is the unwillingness to take the advice of endocrinologists and yet continue to suffer fractures; and, decline to take "meds bc of what osteoporosis patients...said". Osteoporosis is not totally reversible but can be improved with medication and other methodologies. It's a matter of finding the medicine that works best for each individual. Medicine is science, is not static, and improvements continually occur. What was true or available 8-10 years ago may have changed. The medical journey of each person is different and there are some similarities that many on this chat forum have experienced. My severe osteoporosis has improved to osteopenia--and I'll gladly take it! I chose to stay with Tymlos despite some side effects that, thankfully, were minimized with a lower dosage. In the end, we all have to understand there are consequences for each decision we make about our health. We have to decide which consequence(s) we're willing to live with.
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