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Struggling with making an osteoporosis treatment decision
I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.
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I will be speaking with Dr M in a few weeks. My P1NP is like yours and my CTX slightly lower at 514. I wonder what advice he will give me. I am pretty much resigned to starting Evenity after much research and thought. Also, I finally found a doc who got me approved, another hurdle with the uninformed insurance cos. I definitely believe its all a racquet with the pharma cos but I am also scared of waiting too long and fracturing something. Feels like a tightrope walk for sure.
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3 ReactionsDid his book help you make your decision to try Evenity and then Fosimax? Thanks.
It helps you to understand the entire picture so much better. And one conclusion I came to is that IF you're likely to need both a bone builder AND an anti-resorptive, it's better to use a bone builder first and then switch to a bisphosphonate, which is the opposite of what most insurance companies want you to do. In my case, I think since my T scores are not very bad right now, the idea of starting with a bisphosphonate makes sense in that it is a reasonable gamble that I won't ever need a bone builder. Off the top of my head, I think my latest T score was -2.9 in the spine, -2.3 maybe in one of my hips and -1.9 in the other.
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2 ReactionsNo, I purchased his book after I started taking Eventiy. His book was very helpful with lab tests, medications, supplements and general knowledge with Osteoporosis. I had not taken any medication for 6 years ( because there was nothing left for me to try) and felt Eventiy might be different in helping with my numbers, unfortunately I couldn't deal with the side effects so I had to stop after 5 months.
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2 ReactionsMcCormick will support Tymlos, Forteo or Evenity for bone-building., in my experience. There is no date yet on Evenity after the other two, unfortunately.
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2 ReactionsWhat drugs are bone builders, and do they usually have more side effects? Thanks.
Are you saying he doesn't recommend other bone building drugs? Thanks.
i had 1 peolia shot last november and i can say i am so sorry for doing this i had a severe reaction from it and affter 6 wks of taking it had my forst compression fracture but by the time it was diagnosed there was no surgery required. supposed my 6 month prolia ended in may and in august ii had another compression fracture that is still healing. my dr wanyts me to go on eventity and i am fearful.. the prolia left me with such pain that was constant i was and am still taking prednisone to help although i am weaning off it now. the drs know very little of these drugs and what they can do to a person.. i can honestly say it ruined my life and i know i have severe osteoprosis but i don't know what to do
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3 ReactionsDrugs like Tymlos that work by building new bone. Bisphosphonates work by stopping old bone from being reabsorbed, so, yes, your bone density will increase, but the question is how good is the bone that's there? So bone builders work on the osteoblast part of the equation while anti-resorptives (bisphosphnates) work on osteoclasts. The book helps to explain the mechanisms by which the different drugs work. It's really worth the read. You will understand so much more about how your body is working and what's gone off kilter if you read it. Generally speaking, the bone builder drugs are considered to be more heavy duty and they certainly are more expensive, so, yes, side effects can be more of an issue. Having said that, many people have such bad reactions to bisphosphonates that they can't take them and have to go to the bone builders at which point the insurance will pay for them.
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1 ReactionThis is why I would be hesitant to go on something like Prolia. I am hoping with monthly infusions of Reclast, if I have a bad reaction, I can stop taking it and recover faster. With Prolia, once it's in your system, you're kind of stuck for a good six months or more. Windyshores on this site went on Tymlos with good success because you can ramp up slowly on the dosage. That's definitely what I would do if I ever have to go on it.