Tymlos after 18 months

Posted by sbt54 @sbt54, Oct 28, 2023

How long should you wait after completing 18 months on Tymlos before you get follow-up dexascan?

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@sbt54 That’s a very good question. I am starting Evenity in a few days and my endocrinologist told me that he would order a bone density scan after I completed the 12 months. I didn’t ask him, at the time, how long I would/should wait before that bone density scan should occur after the 12 months.

I think this is a question to ask the physician who prescribed the Tymlos. Do you plan to see your provider soon to ask that question?

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Yes, my Dr. said I shouldn't test till I was off it 6 months. But I'm anxious to see if it worked and was wondering what other people did.

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I would want to test as soon as treatment is concluded. There are charts (that I can't find) showing bone loss after treatment, unless treatment is followed by an antiresorptive. It is true that BMD is slower to respond than say bone markers. But in six months you will be measuring gain minus the loss. And does it matter. I want to know how effective PTH hormone is because I'd like to repeat PTH treatment. Maybe, maybe with an antiresorptive in between. If I remember the chart indicates loss beginning two months after cessation of PTH. (If anyone has those charts, please reply.)
Your doctor is way smarter than I am, but parameters are set with economic feasibility in mind.
And bond density tests are harmless.
I'd like to know your results. Keep posting.

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I had a DEXA at 18 months and am still taking Tymlos, for the full two years, only because I need to decide on next treatment and kidneys needed to improve.

You need to go on Reclast or alendronate (or some do Prolia) pretty quickly after coming off Tymlos to "lock in gains." I am doing Evenity to build more bone density, I hope.

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@windyshores

I had a DEXA at 18 months and am still taking Tymlos, for the full two years, only because I need to decide on next treatment and kidneys needed to improve.

You need to go on Reclast or alendronate (or some do Prolia) pretty quickly after coming off Tymlos to "lock in gains." I am doing Evenity to build more bone density, I hope.

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Thank you for the information. How were your results after 18 months?

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February 2024 will be 18 months, but my Dr. doesn't want me to re-scan until August 2024. I go see him in February and may demand to be re-scanned then to see my progress. I do know that he wants to put me on something else at that time like reclast, prolia, etc.
I'll keep you posted.

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I had DEXA scan done around 12 months (mid poaint) after starting Tymlos and there was significant increase in bone mass density (radiologist interpretation of the scan).

The research suggests that maximum increase in bone mass occurs after 8-9 months and then no change (neither increase or decrease).

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@kjoy

Thank you for the information. How were your results after 18 months?

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@kjoy I had 20% gain in spine, from -3.3 to -2.5, which is borderline. And 9% gain in hips, which is more than expected. My femur neck is still -3.6 (up from -4.1) so I pushed for Evenity as follow-up.

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@windyshores

@kjoy I had 20% gain in spine, from -3.3 to -2.5, which is borderline. And 9% gain in hips, which is more than expected. My femur neck is still -3.6 (up from -4.1) so I pushed for Evenity as follow-up.

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Thank you for those numbers. They are so inspiring!!!

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