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Profile picture for lhankins @lhankins

My doctor would not support the lower dose and I wish I had found another doctor rather than going off the medication. My calcium levels went sky high on the full dose and I feel like my rheumatologist panicked. My honesty about lowering the dose backfired on me. I wish I had taken the 6 clicks and just kept it to myself. Others on this site have seen benefits with lower dosing. I find it baffling that the manufacturer provided the optional doses on the pen without any consideration for utilizing titrated dosing. I believe many people are missing out on the benefits of a great medication for no reason.

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Replies to "My doctor would not support the lower dose and I wish I had found another doctor..."

@lhankins I totally agree. I have been to a number of doctors in my life, and I would say that maybe half really knew what they were talking about. They all act like they do, of course. I would not hesitate to lower the dose and not tell them.

@lhankins I agree 100%. I can only hope the manufacturer is in the process of studying the lower dose options and can release that data ASAP for providers. It took me begging and pleading my case to just get just a "one-month" refill of Tymlos (after completing my first 3 months), because I am only able to tolerate (barely) a half-dose. My provider was terribly relictant to extend my Tymlos and is unable/unwilling to provide support or recommendations regarding my dosing strategy. I realize my body needs to drive that decision anyways, but it's CRAZY (and sad) that I have to take this on without my provider's full support. You would think that somebody willing to continue with side effects and utilizing a lower dose would benefit other people in their practice and they would take advantage of my willingness/desire to remain on the med and follow me extra carefully in order to see if they should consider expanding this option to more of their patients. Healthcare providers can be so darn fearful of liability that patients on newer meds are being hurt in the interim, while waiting for future studies and data to be collected and released. What makes this so frustrating is the fact that so many people on this forum are reporting incredible improvements on their DEXA bone scans from reduced doses. So, what's to lose, if bone markers are monitored and the drug has a short half-life that can be stopped at anytime foe another treatment? Little-to-nothing to lose, but LOTS to gain??? Frustrating and sad. Radius needs to get off their butts, release more clinical trial data, and communicate with health providers.