Is your doctor comfortable/willing to support reduced doses of Tymlos?

My doctor is a rheumatologist in Brooklyn, New York

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.

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.

@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.

@cathyf31
Liability is what unfortunately drives much of the decision making for these drugs. I couldn’t even get my rheumatologist to order up bone turn over markers; he stated that endocrinologists do that. When I asked for a referral from my primary there was a year long waiting list to see an endo in my area. I am now on the long road of BHRT, weight lifting, high protein intake and supplements praying I can come up out of this hole. It’s beyond frustrating because I do believe if there was a ‘will’ to make these changes that could benefit so many it would happen.

@lhankins I hope you went ahead and got on that waiting list for an appointment with the endocrinologist. Then, actively monitor for cancellations and hopefully, you'll get in MUCH earlier. Good luck!!

@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.

@cathyf31 There is nothing to gain for biopharmaceutical company Radius to invest in showing that people need LESS of their product. And the NIH research budget is being cut. So "waiting for future studies and data to be collected and released" on this existing medication is futile.

Doctors, such as your provider, are right to fear liability and I get why they are unwilling to step outside of fully FDA approved protocols. When something goes wrong people want to blame someone. I have a friend who was an obstetrician. She calculated that her practice had to function for months just to pay for insurance. She advised her very-intelligent children not to become doctors, and they didn't. Plenty of people here have noted that it takes months to get certain doctors appointments because we have a shortage of doctors.

I am sorry about your frustration with your provider, but I blame the system. And I am thankful that your doctor is still practicing and doing what good he or she can. (I am a retired engineer and have never worked in the medical field.)

@kfhoz The other side of that coin would be Radius investing in some case studies/clinical trials to show that it's safe and still effective....although less effective than the 80 micrograms per their clinical trials, but still the dosing versatilitt exists as an option rather than patients completely having to abandon the drug. We all know money drives businesses. Radius is still getting the same money, whether we throw away an empty cartridge after 30 days or one that still half full. Some providers simply need a general statement that says at the discretion of the prescribing physician, the option exists to adjust the dosage to mitigate side effects...with a note thatbindicates the effectiveness may be less than the full dose determined to be the best via clinical trials. Anything official to even let them providers know that the pen is adjustable and titrtsting is an option. If they could do some case studies to determine if daily lower doses & titrating recs is more effective than full doses every other day would be icing on the cake. Who knows how many patients Radius has lost, due to full-dose side effects and physicians not realizing dosing adjustments are even an option. Sure seems like a little investment money on their part would increase their potential patient base. I had a lengthy discussion with a specialty pharmacist who has been on calls with Radius in the past. He agreed that it would be very beneficial for all, if they would release some of their clinical trial data or conduct some case studies, and produce a cartridge that is potentially half the size of the current one for those people needing reduced doses vs. tossing half cartridges in the garbage. 10 years from now, I trust more physicians will be comfortable adjusting the doses, like they do now with many other medications, but because Tymlos's is relatively new, that comfort level does not exist with some at this point. For those of us making decisions now on our osteoporosis journey, our 24 month window is closing quickly. Future data releases/discoveries will have no bearing for us, but may certainly help others.