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 njx58 @njx58

@dvcall52 No, it was mostly covered by insurance. On my Medicare Part D plan, I had to pay the annual cap ($2100 at the time). My wife is on Tymlos; she's not on Medicare, but she uses the manufacturer's copay card which provides $7500/year for two years. That plus her insurance coverage keeps the cost manageable for us.

If I had to pay the sticker price ($2900/month), then sure, it would be impossible !

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@njx58 thank you!

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Sometimes we need to just listen, sometimes it helps to hold someone's hand, and sometimes we just need to tell it like it is. Honestly, I don't understand why people play Russian roulette with their health. You're young (I'm nearly 80 yrs. old) and osteoporosis could shorten your life. Get over yourself about taking medications. It's important to work with your doctor and not simply look to others for medical advice or give credence to bad experiences of others.
In November 2025, I was diagnosed with severe osteoporosis. I lived in a fool's paradise thinking that an active life, healthy diet, healthy lifestyle, supplements, BHRT (bio-identical hormone replacement) would prevent osteoporosis. I don't smoke or drink and mostly stay away from processed foods. It's an absolute miracle that I never experienced any fractures given my activities (cycling, running, hiking, gardening, walking). Two years before I had a total hysterectomy and was literally bent backwards throughout the procedure and most likely already had osteoporosis.
Full disclosure: I have taken BHRT for over 30 years and progesterone is a component. I found out that progesterone aids in sleep and helps alleviate Tymlos side effects. I take BHRT meds at night just before going to bed and my body works through the Tymlos side effects while I sleep.
True story: when I found out that I had to take Tymlos and self-inject it on a daily basis, it freaked me out and I asked if there was a pill that could be taken as an alternative. While the endocrinology nurse was preparing to show me how to self-inject, she quietly spoke and said, "At your age, I'll bet you've had to deal with a lot of hard things in life." I responded, "Yes, indeed I have." That's when she said, "OK, this is just one more." I suppose some people might have been offended, but I laughed so hard because she was right!
I totally understand your fears and concerns because I'm the same way about medications. Every action we do or don't do has consequences. We have to decide which consequence(s) we're willing to live with. Osteoporosis is not curable but can be improved. I absolutely hate the daily injections, but I have a strong survival instinct and chose life and a reasonable assurance from the doctor that Tymlos would help grow bone and prevent further spine deterioration--and it has. Nearly a year later, the severe osteoporosis has improved and I've achieved osteopenia status. I'll gladly accept this and am thankful that the severity of my osteoporosis was discovered and saved this old lady from a painful future.

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I’m right with you re fearing the meds. I don’t want them either. I see positive results from Algae-Cal which is a supplement. I’ll try that.

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Profile picture for memuno1stborn @memuno1stborn

Sometimes we need to just listen, sometimes it helps to hold someone's hand, and sometimes we just need to tell it like it is. Honestly, I don't understand why people play Russian roulette with their health. You're young (I'm nearly 80 yrs. old) and osteoporosis could shorten your life. Get over yourself about taking medications. It's important to work with your doctor and not simply look to others for medical advice or give credence to bad experiences of others.
In November 2025, I was diagnosed with severe osteoporosis. I lived in a fool's paradise thinking that an active life, healthy diet, healthy lifestyle, supplements, BHRT (bio-identical hormone replacement) would prevent osteoporosis. I don't smoke or drink and mostly stay away from processed foods. It's an absolute miracle that I never experienced any fractures given my activities (cycling, running, hiking, gardening, walking). Two years before I had a total hysterectomy and was literally bent backwards throughout the procedure and most likely already had osteoporosis.
Full disclosure: I have taken BHRT for over 30 years and progesterone is a component. I found out that progesterone aids in sleep and helps alleviate Tymlos side effects. I take BHRT meds at night just before going to bed and my body works through the Tymlos side effects while I sleep.
True story: when I found out that I had to take Tymlos and self-inject it on a daily basis, it freaked me out and I asked if there was a pill that could be taken as an alternative. While the endocrinology nurse was preparing to show me how to self-inject, she quietly spoke and said, "At your age, I'll bet you've had to deal with a lot of hard things in life." I responded, "Yes, indeed I have." That's when she said, "OK, this is just one more." I suppose some people might have been offended, but I laughed so hard because she was right!
I totally understand your fears and concerns because I'm the same way about medications. Every action we do or don't do has consequences. We have to decide which consequence(s) we're willing to live with. Osteoporosis is not curable but can be improved. I absolutely hate the daily injections, but I have a strong survival instinct and chose life and a reasonable assurance from the doctor that Tymlos would help grow bone and prevent further spine deterioration--and it has. Nearly a year later, the severe osteoporosis has improved and I've achieved osteopenia status. I'll gladly accept this and am thankful that the severity of my osteoporosis was discovered and saved this old lady from a painful future.

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@memuno1stborn
You’re fortunate you didn’t have significant side effects.

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Profile picture for maconsulting2 @maconsulting2

@memuno1stborn
You’re fortunate you didn’t have significant side effects.

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@maconsulting2 Don't think for a minute that I didn't have significant side effects (racing heart, nausea, headache, dizziness). I still experience these but to a lesser degree because the dosage was lowered. Anyone who doesn't experience some side effects is probably 1 in a million. Life isn't perfect, at best it's hard. Likewise, medications aren't a cure all and can be uncomfortable to take. If we're looking for an easy fix, we're going to be disappointed. We sometimes have to endure the good with the bad. As long as it's working and the results are helpful, positive, and beneficial, then I'll endure--but not everybody has this same mindset.

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Profile picture for maconsulting2 @maconsulting2

@memuno1stborn
You’re fortunate you didn’t have significant side effects.

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@maconsulting2: I forgot to mention a weird side effect with Tymlos. I sometimes get nauseated a short while before injecting Tymlos. From what I've read, it's an "anticipated" negative response. I feel like crap and this side effect makes me not want to take Tymlos. However, I choose to ignore it and busy myself with other activities and this "anticipatory" nausea goes away. Plus, as noted in my original narrative, I take Tymlos just before going to bed. After researching, it turns out that this is actually the best time because the chemical response that creates nausea works its way out of the body while sleeping. I was doing something good for myself without even knowing it.

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Profile picture for njx58 @njx58

@dvargo That isn't true for Evenity, Tymlos, or Forteo. You've repeated this falsehood a number of times. Why?

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@njx58, it is true for Eveniy. Evenity has the same risks for atypical femur fracture, and osteonecrosis of the jaw and brittle bone because it doesn't rebuild the haversian system that houses the nerve and blood supply to the bone. It builds bone that is less vascular.
You won't repeat this "falsehood" except if you remain convinced of its truth.
That all osteoporosis drugs create weaker bone is not an uncommon mistake.
Thanks to dvargo there is an opportunity to dispell information that we experience as not true.
It may be repeated because our responses aren't convincing, aren't adequate.
Gently, brother. Pray.

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Profile picture for randysarner @randysarner

@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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@randysarner I was told I must start with a -3.9, but my endo did allow P1NP and CTX blood tests, before weight lifting, one month later, to compare. I had no improvement, in fact, more loss. However, I had not progressed much in one month with weights. I now lift MUCH heavier, but I still want to get better. I think improvement does not really show until you can lift over fifty pounds. I am at 25. I have read of people going from osteoporosis to osteopenia with weight training, but they do not say if their numbers were as bad as ours. My thought was to keep lifting for life. I figure that with Tymlos and weight lifting, I can get my bones as strong as possible. I am hoping that weight lifting might be able to keep me off meds after two years on Tymlos. Time will tell. If you add weight training, get help to lift with correct form, and do not add jumping with a -4 score. I only do heel drops and sometimes a jump off a standard step. I had pain trying to do jumping jacks or jumping rope. As far as exercise, you need upright exercise. So, biking and swimming not so much. Google for correct bone exercising. There are great sites out there. AVOID any lifting WITH twisting and AVOID any spine flexing except a mild bend or twist without weights. I feel so much stronger and healthier with lifting. I was walking 10,000 steps a day for years and it did nothing. Good luck! I have my DEXA Oct 8th. It will be five months on Tymlos and five months weight lifting. I starting weight lifting one month before Tymlos, but had to stop weights for one month during that time because I was hurt. I do not think it was the weight lifting. I had a really bad attack of sciatica, which I have had before Tymlos or weight lifting. (I have bulging disks and stenosis for a very long time)

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Wow - sounds like you are doing all the right things! When I saw you were on Tymlos I said - yes! I too, was in denial for years and felt that using the stairmaster weight training nutrition would all be enough but over the last six years I have deteriorated quite a bit. Due to another condition, I had to go on long-term high-dose prednisone so it was one of the first issues my rheumatologist brought up. Honestly, I am so happy at the potential for actual bone building at this point after all these years being afraid of the side effects of the standard meds. I see how prevalent fractures are and feel blessed that so far I have escaped! I am actually doing a short course of physical therapy to be best informed as to the exercises that will really help me without causing harm as you said, no twisting, etc.. I have a long history of going to the gym starting back in the day with spa lady lol! So I applaud your efforts and wish you much success!!

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Profile picture for summera1 @summera1

@randysarner I was told I must start with a -3.9, but my endo did allow P1NP and CTX blood tests, before weight lifting, one month later, to compare. I had no improvement, in fact, more loss. However, I had not progressed much in one month with weights. I now lift MUCH heavier, but I still want to get better. I think improvement does not really show until you can lift over fifty pounds. I am at 25. I have read of people going from osteoporosis to osteopenia with weight training, but they do not say if their numbers were as bad as ours. My thought was to keep lifting for life. I figure that with Tymlos and weight lifting, I can get my bones as strong as possible. I am hoping that weight lifting might be able to keep me off meds after two years on Tymlos. Time will tell. If you add weight training, get help to lift with correct form, and do not add jumping with a -4 score. I only do heel drops and sometimes a jump off a standard step. I had pain trying to do jumping jacks or jumping rope. As far as exercise, you need upright exercise. So, biking and swimming not so much. Google for correct bone exercising. There are great sites out there. AVOID any lifting WITH twisting and AVOID any spine flexing except a mild bend or twist without weights. I feel so much stronger and healthier with lifting. I was walking 10,000 steps a day for years and it did nothing. Good luck! I have my DEXA Oct 8th. It will be five months on Tymlos and five months weight lifting. I starting weight lifting one month before Tymlos, but had to stop weights for one month during that time because I was hurt. I do not think it was the weight lifting. I had a really bad attack of sciatica, which I have had before Tymlos or weight lifting. (I have bulging disks and stenosis for a very long time)

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@summera1
I meant this as a reply to you lol
Wow - sounds like you are doing all the right things! When I saw you were on Tymlos I said - yes! I too, was in denial for years and felt that using the stairmaster weight training nutrition would all be enough but over the last six years I have deteriorated quite a bit. Due to another condition, I had to go on long-term high-dose prednisone so it was one of the first issues my rheumatologist brought up. Honestly, I am so happy at the potential for actual bone building at this point after all these years being afraid of the side effects of the standard meds. I see how prevalent fractures are and feel blessed that so far I have escaped! I am actually doing a short course of physical therapy to be best informed as to the exercises that will really help me without causing harm as you said, no twisting, etc.. I have a long history of going to the gym starting back in the day with spa lady lol! So I applaud your efforts and wish you much success!!

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