1. < Osteoporosis & Bone Health

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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sue225 | @sue225 | Jun 11, 2022
In reply to @windyshores "Reclast is a problem for dental implants too. It is an anti-resorptive like Prolia. I don't..." + (show)
@windyshores

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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Hope you have a great bone density report! Stay well.

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windyshores | @windyshores | Jun 12, 2022
In reply to @sue225 "Re Reclast. First you transition off Prolia. Then you have to wait 5 months to do..." + (show)
@sue225

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

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Got it! Good luck!

Ironic that my endo was more concerned with Reclast and heart arrhythmia than Tymlos.

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catluvr999 | @catluvr999 | Jun 13, 2022
In reply to @tsc "Hi @catluvr999, the MediMaps people will send you a lot of information about TBS. I confess..." + (show)
@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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@tsc Yay....today I finally (after a few days) got a list from the medimaps group listing the TBS facilities in my area. Only about three within a hundred or so miles....and they might be the "for research purposes only" (which I'm guessing means not available to the public) cases but I'll be sure to contact them to find out. IMHO it would have been helpful for medimaps to have simply flagged the "for reach purposes only" cases with an asterisk but maybe they don't have the resources to determine that...only to know who has a TBS setup. Thanks again for the medimaps resource.

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callalloo | @callalloo | Jun 30, 2022

Here's a podcast by the same Dr. Leweicki whose chart was cited. These two endocrinologists recently (May, 2022) discuss incorporating TBS with DEXA to fine-tune diagnoses and treatment of osteoporosis.

Panel Discussion on Integrating TBS into Clinical Practice with Dr. Lewiecki and Dr. Singer

"Alongside Medimaps Group, Dr. Lewiecki and Dr. Singer, two world-renowned leaders in the field of osteoporosis and bone and mineral disease, shared their insights on the use of Trabecular Bone Score in clinical practice during a panel discussion on March 31, 2022 at the 2022 ISCD Annual Meeting."

Watch the panel discussion and:

Understand the clinical benefits of TBS

See how to use TBS in combination with BMD and FRAX in clinical practice

Find out how TBS can help fine-tune treatment decisions

https://www.medimapsgroup.com/panel-discussion-on-integrating-tbs-into-clinical-practice/
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1 reply
Teri | @tsc | Jul 1, 2022
In reply to @callalloo "Here's a podcast by the same Dr. Leweicki whose chart was cited. These two endocrinologists recently..." + (show)
@callalloo

Here's a podcast by the same Dr. Leweicki whose chart was cited. These two endocrinologists recently (May, 2022) discuss incorporating TBS with DEXA to fine-tune diagnoses and treatment of osteoporosis.

Panel Discussion on Integrating TBS into Clinical Practice with Dr. Lewiecki and Dr. Singer

"Alongside Medimaps Group, Dr. Lewiecki and Dr. Singer, two world-renowned leaders in the field of osteoporosis and bone and mineral disease, shared their insights on the use of Trabecular Bone Score in clinical practice during a panel discussion on March 31, 2022 at the 2022 ISCD Annual Meeting."

Watch the panel discussion and:

Understand the clinical benefits of TBS

See how to use TBS in combination with BMD and FRAX in clinical practice

Find out how TBS can help fine-tune treatment decisions

https://www.medimapsgroup.com/panel-discussion-on-integrating-tbs-into-clinical-practice/

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Thank you for posting this, @callallo. It's very interesting.

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kathleenintexas | @kathleenintexas | Dec 10, 2022
In reply to @artscaping "Good evening, @heyhey, Welcome to Connect. Osteoporosis is an active discussion on Connect. Many of us..." + (show)
@artscaping

Good evening, @heyhey, Welcome to Connect. Osteoporosis is an active discussion on Connect. Many of us face the realities of aging when our bones and bodies just don't support regrowth as efficiently as they did when we were younger. All of us age differently and all of us need to consider a bone plan as we are all living longer and we have to keep up with our grandkids.

I have been particularly interested in osteoporosis and will be completing 18 mos of Tymlos in December. This coming Friday I have my first DEXascan since beginning treatment 18 months ago. I am excited and a bit apprehensive. After Tymlos or Forteo, we, as patients need to decide what our next step will be. We have spent up to 2 years building bone and now we have to maintain it.

In my case, I am severely allergic to the biosophonates, so will have to look at something else. Thereby....the apprehension.

In different discussions you will see many questons being explored and experiences being shared. I am first going to ask for your discussion to be moved to one with appropriate contributors to help you.

May you be content and at peace.
Chris

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Follow-up, please, on how your bone scan went after treatment. Also, what was our starting T-score and then follow-up T-score? Thanks.

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kathleenintexas | @kathleenintexas | Dec 10, 2022
In reply to @artscaping "Good evening @heyhey and @hopeful33250, I want to include Theresa in our chat since we all..." + (show)
@artscaping

Good evening @heyhey and @hopeful33250, I want to include Theresa in our chat since we all are on the same hunt for answers. So where are we tonight? Unfortunately, I was unable to find product comparative research. All of the studies so far appear to have been placebo comparative. There are some clinical studies underway and so far the improvement to be found in actual bone density doesn't appear to vary that much from Forteo to Tymlos It is hard to line up women/men with similar presenting issues....everyone is so different.

The reason for a 2 year limit on the bone building twosome....Forteo and , is because after two years the improvement achieved flattens out and the osteoporosis situation reverses itself. My endocrinologist suggested that we stop at 18 months so that we would have longer to find a viable candida for the next step, preserving the progress. As you recall...I am severely allergic to the biosophonates. I am also moving very quickly toward 79 years old. My expectations may pale by comparison to what yours are likely to be at 20 years younger and physically active.

Let's just all keep searching and sharing. You can start @heyhey. Where do we go from here?

May you have contentment and ease.
Chris

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I believe the two-year limit for Forteo and Tymlos is because of the danger of osteosarcoma (bone cancer) for longer than two years.

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1 reply
windyshores | @windyshores | Dec 10, 2022
In reply to @kathleenintexas "I believe the two-year limit for Forteo and Tymlos is because of the danger of osteosarcoma..." + (show)
@kathleenintexas

I believe the two-year limit for Forteo and Tymlos is because of the danger of osteosarcoma (bone cancer) for longer than two years.

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There is no longer a two year limit for Forteo. I believe I read that not a single person has gotten bone cancer. The testing with very high doses given to rats.

I have read that Tymlos is newer but that the limit may be lifted for that as well.

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