Significant osteoporosis: I need a bone plan

Posted by heyhey @heyhey, Nov 15, 2020

60 y/o , fit and active (I thought) but my first bone scan showed osteoporosis in spine (-3.3). Want to start Evenity, Tyblos, or Forteo. Its really the first health issue I've had in my life, and I'm kind of stumped. How can I find reliable third party research into their relative risks & efficacy -- only research I can find online is done by the companies themselves.

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@tsc

I think it was Sara Meeks - or I googled it independently. I'll try to find it again.
By the way, Algaecal has a good YouTube video of Dr. Fishman's 12 Poses which does the modified poses in the time alotted. I find his video a little difficult because it explains the standard poses not the modified ones.

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Hi, @tsc. I just now came across a YouTube video "How to use TBS (Trabecular Bone Score) in combination with BMD in Clinical DXA practice" by searching on YouTube for tbs bone health mccormick. There's a chart that *might* be saying something along the lines of your "30% of the patients considered osteoperodic per the BMD didn't have osteoporosis per the TBS" (or something like that, I don't have your quote in front of me), but I'm having a super hard time interpreting the chart (and the speaker's verbiage). The chart is attached. Is this what you're referring to? I can't tell what it's saying! I need to stop trying to swim upstream . . . I'm in over my head with all this technical info likely geared toward doctors.

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@geedle12

I am confused also what is dexa tbs?

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Hi @geedle12, here's an explanation I found at PubMed.gov, quoted from Bone 2017 Nov; 104;66-72.

"Trabecular bone score (TBS) is a texture index derived from standard lumbar spine dual energy X-ray absorptiometry (DXA) images and provides information about the underlying bone independent of the bone mineral density (BMD). Several salient observations have emerged. Numerous studies have examined the relationship between TBS and fracture risk and have shown that lower TBS values are associated with increased risk for major osteoporotic fracture in postmenopausal women and older men, with this result being independent of BMD values and other clinical risk factors. Therefore, despite being derived from standard DXA images, the information contained in TBS is independent and complementary to the information provided by BMD and the FRAX® tool. A procedure to generate TBS-adjusted FRAX probabilities has become available with the resultant predicted fracture risks shown to be more accurate than the standard FRAX tool. With these developments, TBS has emerged as a clinical tool for improved fracture risk prediction and guiding decisions regarding treatment initiation, particularly for patients with FRAX probabilities around an intervention threshold. In this article, we review the development, validation, clinical application, and limitations of TBS.

Dexa (or, more properly, DXA) refers to the Bone Mineral Density, from a bone scan DXA scan, while TBS Traebecular bone score is another test that measures the microarchitecture of the bone. The FRAX tool calculates the risk of fracture, based on information provided by the user. That can be found on line at American Bone Health and other organizations.

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@catluvr999

Hi, @tsc. I just now came across a YouTube video "How to use TBS (Trabecular Bone Score) in combination with BMD in Clinical DXA practice" by searching on YouTube for tbs bone health mccormick. There's a chart that *might* be saying something along the lines of your "30% of the patients considered osteoperodic per the BMD didn't have osteoporosis per the TBS" (or something like that, I don't have your quote in front of me), but I'm having a super hard time interpreting the chart (and the speaker's verbiage). The chart is attached. Is this what you're referring to? I can't tell what it's saying! I need to stop trying to swim upstream . . . I'm in over my head with all this technical info likely geared toward doctors.

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Hi @catluvr999, the MediMaps people will send you a lot of information about TBS. I confess I haven't had a chance to look at it yet. Maybe it's more understandable.
Did you use the FRAX tool (at American Bone Health) to calculate your risk of fracture in the next 10 years? Mine is high, but it only asks for the DXA score.
If I find anything helpful, I'll post it. Take care.

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@tsc

Hi @catluvr999, the MediMaps people will send you a lot of information about TBS. I confess I haven't had a chance to look at it yet. Maybe it's more understandable.
Did you use the FRAX tool (at American Bone Health) to calculate your risk of fracture in the next 10 years? Mine is high, but it only asks for the DXA score.
If I find anything helpful, I'll post it. Take care.

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Hi, @tsc. Yes I used the American Bone Health fracture risk calculator. I assumed that the T score they wanted was my worst reading so I went with that.....-2.8. My lifestyle/history-type risk related answers were all No, so I'm guessing the score couldn't be any better than it is for my age/height/t score. Results: Any fracture in 10 years....19%....Average for my age.....11%......10 yr risk of hip fracture.....6%. Attached....if it attached.

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@catluvr999

Hi, @tsc. Yes I used the American Bone Health fracture risk calculator. I assumed that the T score they wanted was my worst reading so I went with that.....-2.8. My lifestyle/history-type risk related answers were all No, so I'm guessing the score couldn't be any better than it is for my age/height/t score. Results: Any fracture in 10 years....19%....Average for my age.....11%......10 yr risk of hip fracture.....6%. Attached....if it attached.

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Hi @catluvr999, my risk is higher than yours - 45% for fracture in the next ten years and 10% for hip fracture, but still, I'm optimistic that I can improve. It would be so helpful to have the TBS!

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@sue225

If it was me, I would not go back on Tymlos. Would be worried about landing in the hospital again. There are other drugs to be tried.
Your husband will just have to be patient! You sound like you are doing the best you can. Wish you daily continued improvement. And no more Tymlos.

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@sue225 thanks for all the words of encouragement. Sorry if I rambled on about how life is now. Probably not very interesting. Let me know what your drug will be. I want to learn all I can about the different drugs on the market. Thanks for the kind ear and hope to hear from you again with more info. KLH

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@sue225

Its definitely a problem. Thats a lot of waiting with Reclast. And with my arrythmia (ventricular tachycardia) tymlos and forteo seem too risky.
The researchers need to come up with a better drug.

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I am the one cited by @kilh who went to the ER with afib during the first few weeks of Tymlos. There is no proof whatsoever that Tymlos caused this. I end up in the ER with dramatic afib and tachycardia once a year and this was on schedule.

I met with no less than three cardiologists and three endocrinologists to decide between going back on Tymlos or trying Evenity. I chose retrying Tymlos because I can follow it with Evenity, but not vice-versa.

Instead of starting at a full or half dose, I started with two out of 8 clicks. I have been on 7 clicks (sometimes 6) for 9 months. Doc says 6 is fine but I do 7.

I have had zero heart issues this way. My body adjusted with the slow taper. I do have fatigue at times, but that's about it. Headache, dizziness and other side effects went away for me (and others) in the first weeks.

I had intolerable light-headedness, shortness of breath and fast heartbeat with Forteo. Probably because you can only take a full dose.

@sue225 I am not familiar with your issues and am not going to suggest strongly what to do, but just want to say that the ability to start Tymlos at a low dose and let my body adjust, was a major benefit for me with my heart arrythmia and tachycardia. No heart issues at all for me once I started low!

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@windyshores

I am the one cited by @kilh who went to the ER with afib during the first few weeks of Tymlos. There is no proof whatsoever that Tymlos caused this. I end up in the ER with dramatic afib and tachycardia once a year and this was on schedule.

I met with no less than three cardiologists and three endocrinologists to decide between going back on Tymlos or trying Evenity. I chose retrying Tymlos because I can follow it with Evenity, but not vice-versa.

Instead of starting at a full or half dose, I started with two out of 8 clicks. I have been on 7 clicks (sometimes 6) for 9 months. Doc says 6 is fine but I do 7.

I have had zero heart issues this way. My body adjusted with the slow taper. I do have fatigue at times, but that's about it. Headache, dizziness and other side effects went away for me (and others) in the first weeks.

I had intolerable light-headedness, shortness of breath and fast heartbeat with Forteo. Probably because you can only take a full dose.

@sue225 I am not familiar with your issues and am not going to suggest strongly what to do, but just want to say that the ability to start Tymlos at a low dose and let my body adjust, was a major benefit for me with my heart arrythmia and tachycardia. No heart issues at all for me once I started low!

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@windyshores Not sure how I got that mixed up. In any event good info about Forteo and Tymlos. Forteo with my nonsustained ventricular tacycardia & atrial tacycardia definitely not for me.
I'm on Prolia now for past four years. My only choice right now should I choose to discontinue would be Reclast as that is a drug used to transition off Prolia. And the only reason to switch is to do dental implants. Its so easy to be on Prolia.
Glad that Tymlos worked for you.

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@sue225

@windyshores Not sure how I got that mixed up. In any event good info about Forteo and Tymlos. Forteo with my nonsustained ventricular tacycardia & atrial tacycardia definitely not for me.
I'm on Prolia now for past four years. My only choice right now should I choose to discontinue would be Reclast as that is a drug used to transition off Prolia. And the only reason to switch is to do dental implants. Its so easy to be on Prolia.
Glad that Tymlos worked for you.

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Reclast is a problem for dental implants too. It is an anti-resorptive like Prolia.

I don't know if Tymlos has worked yet! I have to wait for my next scan 🙂

My doc would not put me on Prolia, not sure why (maybe the drop off in bone density when stopped?) and would not put me on Reclast during my cancer treatment because at the time it was thought to exacerbate afib.

Tymlos or Evenity were the two drugs that felt safest to me. If Tymlos doesn't do enough I will switch to Evenity.

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Re Reclast. First you transition off Prolia. Then you have to wait 5 months to do implants.

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