← Return to Tymlos Side effects
Discussion
Osteoporosis & Bone Health | Last Active: 4 days ago | Replies (110)
Comment receiving replies
Replies to "@cathyf31 I tried to get info from Radius about going off-label on doseage as my side..."
Connect

@willowmena Yes, I think it's beyond sad (horrible) that Radius is unable/unwilling to allow any of it employees to comment on any dosage outside of the FDA-approved 80 mcg (which data supported 80 mcg as the biggest bang for the buck with respect to effectiveness). This does not help people like you and me, who cannot tolerate the side effects at full dose. My health provider also will provide zero comments or guidance on any dosage adjusting or titrating. It would be so helpful for rmRadius to simply print one comment that states, "At the discretion of the physician, doses can be adjusted in an attempt to mitigate side effects, with an understanding that maximum benefits will likely not be achieved compared to the full dose. " (Duh). We understand we likely will have reduced gains, but if we can't tolerate the medicine and otherwise have to stop, we would have zero gains.
Not long ago, somebody shared a link to some clinical trial information on Tymlos. It is the only place in print I have ever seen a mention of reduced doses, specifically 20 mcg and 40 mcg in Phase 2. I will take a screenshot and attach a snippet of the information. I actually shared this with my provider, who originally until I shared with her, did not know that the pen was even adjustable. I do find it interesting that her quiet position that requires me to navigate my own waters, due to the severity of my side effects, is allowing me to continue to use the medication though (although still preferring I stop). At the beginning, she pushed back hard and I did not think that I would be abke to continue. We are both very concerned with my only next step (Reclast), so maybe that is why I've been allowed to continue.
I did speak with a Radius employee, who gave me a recommendation to have my provider call in and speak to a Science Liaison at Radius to see if that individual would be willing to share the data and potential benefits about the lower doses. My provider called multiple times, but never received a return call. Terrible. I also spoke to a specialty pharmacist who had been involved in previous Radius calls and agrees 100% that Radius should release that data and even produce a smaller-sized cartridge for the lower doses, so the extra medicine is just not thrown away after 30 days. He said that he would diligently work to try and get on with another call with Radius. Sadly, we can all see the painfully slow and dangerous pace of improvement in the world of osteoporosis.