1. < Osteoporosis & Bone Health

What if you cannot tolerate any osteoporosis drugs?

Posted by tkdesign @tkdesign, Apr 16 8:25am

My bone density is quite low in y 50s, but I have tried an failed every class of drug out there. The side effects were so severe I could not function. I'm not sure if it's genetics, or that I"m very low weight/small size person, or something else. I have a connective tissue disorder overall, and despite being on HRT for a few years now, it's done nothing to stop bone loss in my spine. Anyone else in this situation? I feel so hopeless about a likely short lifespan.

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drsuefowler | @drsuefowler | Apr 21 10:26am
In reply to @tkdesign "I'm disturbed that my dr did not even mention that to me. I was told to..." + (show)
@tkdesign

I'm disturbed that my dr did not even mention that to me. I was told to increase my calcium intake as my urine levels were low...though just random urine, didn't do 24 hr...is that better? But now I start Tymlos, I don't know what to do.

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My experience is that the endocrinologists don't know what to do either. Mine told me that I know more about this than he does. I am so tired of trying to figure all this out myself. Thankfully, I have this website with some other very knowledgeable and helpful people. My regular urine test was normal and the 24 hour one was not. However, only one PA was concerned about the high calcium in my urine. She wanted me off the Tymlos, but I asked to be tested again taking less calcium. Two endocrinologists and a kidney doctor said that it only mattered if the calcium in my blood was too high. I do worry about kidney stones with high levels of calcium in my urine.

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tkdesign | @tkdesign | Apr 21 12:52pm
In reply to @drsuefowler "My experience is that the endocrinologists don't know what to do either. Mine told me that..." + (show)
@drsuefowler

My experience is that the endocrinologists don't know what to do either. Mine told me that I know more about this than he does. I am so tired of trying to figure all this out myself. Thankfully, I have this website with some other very knowledgeable and helpful people. My regular urine test was normal and the 24 hour one was not. However, only one PA was concerned about the high calcium in my urine. She wanted me off the Tymlos, but I asked to be tested again taking less calcium. Two endocrinologists and a kidney doctor said that it only mattered if the calcium in my blood was too high. I do worry about kidney stones with high levels of calcium in my urine.

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That's pretty scary. Another reason I've rarely used any pharma my whole life. Yes kidney stones would be a concern. Why are we paying to see these drs if we are expected to know more? Maybe they should pay us.

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