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Forteo vs. Tymlos: Which did you choose?

Osteoporosis & Bone Health | Last Active: 6 days ago | Replies (631)

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@laurapearl

@artscaping i just thought i would reply to this, since it has similarities to my situation -- but my solution is off-label and therefore i am recommending it. @salpert i wonder if, by any chance, you are a small(ish) person? i also had lingering palpitations (plus a high degree of nausea) when i first began doing tymlos -- so much so that after about 2 months my rheumatologist sent me to a cardiologist and i wore a heart monitor for a month. the conclusion of that assessment was that my heart rate was indeed being heightened after the injection more and for a longer time than expected (i.e., some period of increase is a typical side effect of tymlos) but that it was not dangerous if i was not too uncomfortable. wellllll i was tremendously uncomfortable and didn't feel that i could commit to an extended period of good medication compliance under those circumstances. as i am a small adult (small stature and below 100 lbs), i wondered if the standard adult dosage could possibly just be too high for me. i then took it upon myself 🙂 to lower my dosage to half the usual. you can do that by turning the pen only 4 clicks instead of 8. thereafter, my heart rate was heightened for only a hour or so after administration as it is for most people AND at the end of the year, my bone density showed an increase of 14.5%. the makers of tymlos should investigate such dosage issues and perhaps refine their recommendations based on body size and weight.

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Replies to "@artscaping i just thought i would reply to this, since it has similarities to my situation..."

@laurapearl, that is really interesting. And such a tremendous increase. I think they likely do trials against a range of sizes and look at average. It's such a new drug that my guess is it will take a while to perform dosing studies. I am not as small as you but below 110 lb, and although I tolerate the dosage fine, but why take more if I don't have to. Also, I wonder if this could effect how long during a life time it could be used. Of course that question can't be answered now, but wonder if you take 1/2 does would 4 years be allowable - that would be especially significant for those of us that use up our time allotment so early in life and cannot tolerate oral bisphosphonates to help in between. I hope your doctor shares with makers of Tymlos. I'm going to share with my endocrinologist to see if any studies are in action. Thanks for sharing.

Good morning....and YES to your question. I am a very small boned person. 95lbs. I, too, thought the dosage on Tymlos may be too high for my small frame. “One size does NOT fit all”. My endocrinologist recommended to take myself off during the coronavirus. I am waiting to see a new endocrinologist at Mayo and trying to do the visit via Telemed. I will let you know what the new doctors recommendations are for my small frame.
Best of luck. Stay well, safe and strong!

@laurapearl, Hey there.....thanks for your post. I do remember that there was discussion about cutting the dosage in half. Although I figured that you could do it....I did not know if your endocrinologist would approve. I was able to talk to the manufacturer when I needed my Rx refilled. Let me see if I can float the dosage issue again this week.

Be safe and protected.
Chris