Post Tymlos No Significant Change on Reclast

Posted by seelex02 @seelex02, Feb 10 10:41am

After two years on Tymlos in which spine and hips improved significantly -3,3 to -1.6; -2.0 to -1.6 femoral neck), no change on Reclast. Is that typical? Feeling disappointed because my TBS went down. Thanks for your thoughts!

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Seelex, despite the diappointment, you're looking darn good. Some loss is rather expected because Tymlos really builds excellent bone. In preventing the loss of damaged bone Reclast increases density by collecting older fissured bone. It stops the process of bone regeneration, Without Reclast you would have lost the advantage gained by Tymlos. So your body managed tor maintain your advantage.
TBS is software that looks at the same images as dexa but looks for homogeneity--whether the loss of bone is spread out more evenly or focalized. Trabecular bone is all these slender spicules. If you lose more bone in a focalized pattern, you are more likely to fracture than if the loss is evenly distributed. Of course your bones don't look like this you have much more bone and there are blood vessels and nerves that have been removed. https://en.wikipedia.org/wiki/Trabecula
We generally lose a lot of spicules before there is recognizable crush.

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Thank you Gently, this is super helpful! After I posted I spoke with my endocrinologist who was also pleased, despite the low TBS. She plans to look at how things are balancing out in terms of my bone markers, especially CTX, before deciding on a second infusion. You really helped me understand Reclast! Best wishes!

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@kathleen1314 Thank you! I always enjoy reading your posts here and on Inspire. They are so deeply informed!

I decided to submit my scan to Dr. Lani Simpson, who does an assessment for a fee to make sure it was done correctly.

I agree with you about considering REMS a tie breaker re bone quality. Dr. Andy Bush told me it generally lines up with TBS. But I also understand some of the skepticism about REMS because the fragility score includes demographic data, specifically age, which can skew the results negatively if you are older. I do know of one such case, with a REMS fragility score in the red and a stellar TBS!

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