Am I the only one that’s in denial?

Posted by indenial @indenial, Sep 18 10:26am

Is there anyone else in this group that refuses to start treatment? I’m 62 years old with a T score of -3.8 in hips and spine. Even though I’ve just suffered a painful compression fracture, the alternative (Meds) still scares me to death. I feel like I’m too young to start treatments that will cause rapid bone loss the minute you stop medication. I realize you go on to a second medication to lock in the gains, but then what?? At 62 years old, the treatment sounds more terrifying than the disease itself. I’m doing all the natural things in the meantime and awaiting a new DEXA scan. I did have a slight improvement on my last one, this was mainly from collagen peptides, calcium, D3 with K2 and walking on treadmill. I know I should have added light weightlifting to the regimen, but hindsight is 2020. When I am fully healed, I plan to go that route as well. I’ve read all the pros and cons to every single medication on the market and the cons, for me, seem to outweigh the benefits. Am I alone in this thought process?

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Profile picture for dvcall52 @dvcall52

@llander1966
My story. Too many other things wrong with me and cannot imagine something else and the anxiety about being crippled doesn’t help.

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@dvcall52 Exactly! I already have one chronic pain disorder. The idea of another one from one of these drugs is terrifying.

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Profile picture for njx58 @njx58

@boneoptimist If you're taking Tymlos, you're not getting brittle bones. That was a problem when Fosamax was the only medication on the market: it didn't really build good bone density. Tymlos does. Afterwards, Fosamax helps preserve those gains. And, you don't have to take it forever. It's recommended to take drug holidays every so often, where you take a couple of years off (Fosamax stays in the bones for a long time, so a holiday is OK.)

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@njx58 , i was referring to the drug after Tymlos. I plan on not taking Fosamax. I will choose something else, or nothing al all, and up my exercise and monitor via bloodwork and Dexa for the first 6 months. We'll see!

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Profile picture for boneoptimist @boneoptimist

@njx58 , i was referring to the drug after Tymlos. I plan on not taking Fosamax. I will choose something else, or nothing al all, and up my exercise and monitor via bloodwork and Dexa for the first 6 months. We'll see!

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@boneoptimist Would one year of Evenity be a temporary solution for you?

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Profile picture for boneoptimist @boneoptimist

@indenial , I also saw this study about various drugs and the loss rate after stopping them. Unfortunately, Tymlos (abaloparatide) is not included. I worry about bone loss and brittle bones from bisphosphonates. My mom did Fosamax, and her jaw was like Swiss cheese. I'm not looking forward to deciding what's after Tymlos if I can't keep my BMD up after ending it.
Here's the study:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8519894/
Hope it's helpful!

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@boneoptimist I agree. For me, I am totally paranoid about even starting the drugs because of the side effects. Then there is the rate of bone loss when I stop taking the drug. And the possibility, although it is very low, of osteonecrosis. I do read about women taking different bone drugs, and it does not do anything to improve the density, or only very little. So, it is almost like a gamble.

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Profile picture for WilWeten @wilweten

@boneoptimist Would one year of Evenity be a temporary solution for you?

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@wilweten , honestly if I can't maintain whatever BMD I get to (in this next year on Tymlos) by keeping my routine up after stopping Tymlos, Evenity might be what I'm leaning toward. So much can change in a year, so I will start heavier research on my end in about 6 months, and hope that new studies/research come out meanwhile that can guide me. Fingers crossed!

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Profile picture for jenben59 @jenben59

@boneoptimist I agree. For me, I am totally paranoid about even starting the drugs because of the side effects. Then there is the rate of bone loss when I stop taking the drug. And the possibility, although it is very low, of osteonecrosis. I do read about women taking different bone drugs, and it does not do anything to improve the density, or only very little. So, it is almost like a gamble.

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@jenben59 , don't get me wrong, I'm talking about looking for the drug after the one I'm on, if I didn't make that clear. I'm getting excellent results on Tymlos and hoping (and working really hard) to get to normal bone density in the next year. I went from severe OP to OP, and now into osteopenia, so I'm very hopeful.
Good luck in your bone journey!

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Profile picture for boneoptimist @boneoptimist

@wilweten , honestly if I can't maintain whatever BMD I get to (in this next year on Tymlos) by keeping my routine up after stopping Tymlos, Evenity might be what I'm leaning toward. So much can change in a year, so I will start heavier research on my end in about 6 months, and hope that new studies/research come out meanwhile that can guide me. Fingers crossed!

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@boneoptimist I've still about 14 months of Tymlos ahead, but I'm also already very interested in what new studies/research come out meanwhile. So, please keep sharing your insights.

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Profile picture for summera1 @summera1

I wanted to be in denial, but PC, endocrinologist, and orthopedic all said absolutely not when I asked about delaying meds. (-3.9 spine) I am hoping I can choose no meds after two years on Tymlos, or a new vaccine or meds come out by then. I am showing gains on Tymlos. I have side effects, but they are bearable. I do take a reduced dose. Was 4 clicks, but now 5, going to start 6 soon. Full dose is eight clicks. Before starting meds, I did weight lifting for a month and there was no improvement in P1NP or CTX. (I am not stopping weight lifting and hope that I will be able stop all meds in two years.) After three months on 4 clicks of Tymlos, I saw 90% improvement on P1NP. While a hip fracture would be unpleasant, a spine fracture and possible spinal cord injury terrifies me, so I took the meds. Do not take bisophates as the first drug. There is an order to take. https://www.youtube.com/watch Avoid Prolia. This woman reversed hers, but my doctor will not agree to HRT. https://www.youtube.com/watch

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@summera1 wow I did not know exercise and weight lifting training helped. I was told by my Endo I was going on Evenity and that was it. No real discussion. My first shot is October 7th. Glad I found this group. I’m 66 and evidently flushing out calcium . Dr is looking into why and said i needed to start this ASAP my dec was a -4

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Profile picture for rsdcellist @llander1966

@dvcall52 Exactly! I already have one chronic pain disorder. The idea of another one from one of these drugs is terrifying.

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@llander1966
Just adds to my list of reasons for anxiety too

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Profile picture for boneoptimist @boneoptimist

@wilweten , honestly if I can't maintain whatever BMD I get to (in this next year on Tymlos) by keeping my routine up after stopping Tymlos, Evenity might be what I'm leaning toward. So much can change in a year, so I will start heavier research on my end in about 6 months, and hope that new studies/research come out meanwhile that can guide me. Fingers crossed!

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@boneoptimist That's the recommended sequence: Tymlos or Forteo, followed by a year of Evenity if you still need more bone density. Whether Evenity is used or not, the final step would be Fosamax or Reclast. You cannot stop Tymlos and take nothing, though. Exercise, vitamins, etc. will not stop you from losing your gains. That is proven.

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