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Tymlos Side effects

Osteoporosis & Bone Health | Last Active: 5 days ago | Replies (110)

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@osteopatient2026 Yup. Tymlos is my last drug option, before defaulting to Reclast (due to previously failed treatment meds' severe side effects). My reduced dose on Tymlos is driven 100% by inability to tolerate the side effects. My provider wanted me to stop this drug, but it is my last hope of building bone and leaves only Reclast as the next step. Side effects are challenging enough that I could raise the white flag at any minute. I just think it's terrible that Reclast does not provide providers any guidance whatsoever regarding lower dose ootions. We see way too often on this site that doctors, including mine, did not even know the pen could be titrated. My provider is against my off-label lower dose and will not provide any titrating guidance whatsoever. However, she is allowing me to continue, because she knows I'm in a difficult situation with no remaining options...and she is worried about my reacting to Reclast. Just not understanding why Reclast won't put out an official statement that would say something along the lines of suporting dose reductions (with likely less effectiveness), based on clinical trials AND at the discretion of the physician. Some reduced-dose folks on this site have reported incredible gains. For some of us, we're in a position that some improvement sure as heck beats no chance of any at all.

From a financial standpoint, Radius is still getting their full amount of money from me, even though I'm throwing away half the pen each month. Why wouldn't they want to continue with patients like me, who may be able to tolerate the lower doses, but whose doctors won't allow it, because there's no guidance from Radius? I spoke to a pharmacist, who has been involved with development phone calls with Radius, and even he doesn't understand why they don't put out this information and create a lower volume cartridge for those of us who can't tolerate the full 80 mcg. We all know the research in this entire area is lagging terribly. And expecting changes anytime soon it's just not realistic. Sad.

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Replies to "@osteopatient2026 Yup. Tymlos is my last drug option, before defaulting to Reclast (due to previously failed..."

@cathyf31 I tried to get info from Radius about going off-label on doseage as my side effect is fatigue and bone pain at 80 mcg. I found I can tolerate 70 mcg and live with the fatigue and the bone pain is not present at the lower dose. Radius had no comment at all about lower dosing. I also spoke with my endo who had no comment either. I think she did not want to provide an opinion, perhaps worried about liability? However, at 108 lbs. and 5'5", the 80 mcg dose creates considerable side effect discomfort. And 10 months after starting Tymlos in October and 9 months after I actually began monitoring bone markers in November, I had a 300% increase in P1NP on the lower dose.