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What if you cannot tolerate any osteoporosis drugs?

Posted by tkdesign @tkdesign, Apr 16, 2025

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, 2025
In reply to @tkdesign "I'm disturbed that my dr did not even mention that to me. I was told to..." + (show)
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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, 2025
In reply to @drsuefowler "My experience is that the endocrinologists don't know what to do either. Mine told me that..." + (show)
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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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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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pattyannblack | @pattyannblack | Apr 12 6:17pm
In reply to @sondrachristo1 "@tkdesign Our stories are very similar, I’m so sorry you are going through this. I have..." + (show)
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@tkdesign
Our stories are very similar, I’m so sorry you are going through this.
I have been on 5 different osteoporosis meds since 2018. And had side effects from all of them, some severe.
I am 65 and started HRT 6 weeks ago, I am having side effects, palpitations and dizziness.
Sometimes I think that because I have a few autoimmune conditions, I am unable to tolerate any of these meds.
Funny thing, I take a statin and have never had any issues with it, however, I hear about many that can’t tolerate them. Go figure.
I don’t expect to grow much if any bone on HRT, but I’ll be thrilled if I can remain stable.
Have you experienced any side effects from HRT? What side effects have you dealt with on osteoporosis meds?

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@sondrachristo1 I am having similar reactions to you. I first tried risedronate with terrible pain in my arms and legs. Then in Feb 2026 I was given Prolia. I am totally crippled. I feel like I am walking on rocks. My hands are so sore I can hardly use them. My wrists ache. Two weeks ago my knee gave out with acute pain. I am 69 years old with a -3.5 SD for osteoporosis. My back aches if I stand up too long. I will not take the next shot in August. I don't want to live like this. I am also dealing with the thought of having a shortened life because of this drug but I would rather live a few more years without pain than try any of these drugs again.

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