Forteo vs. Tymlos: Which did you choose?
I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!
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Hello Applesforall5370. Thank you for this encouraging post! So happy for you! May I ask what city you're in as I too go to Mayo? Also, what did you take after Forteo or are you still on it? I'm about to start Evenity or perhaps Forteo. Thank you! Kolika
@katwhisperer I came up with the idea of starting Tymlos at a low dose, myself. My doctor was delighted. I also called Radius (the manufacturer of Tymlos) to talk to them about it. I told them they might be losing customers who react badly at first to a full dose.
I was never able to take Forteo. I went to an immunologist to try to get on it, years ago, and spent a day in the office trying to get desensitized with small doses. I wasn't thinking of that but maybe it influenced me.
I ended up in the ICU when I tried a higher dose on Tymlos, with afib. I can't say for sure that it was caused by the med, since I have had episodes once a year since 2015. But it felt related. I was very determined to get on Tymlos and starting low was the only way.
My doctor was happy when I reached 6 clicks and for more than a year I have been doing 7.. I still cannot do 8!
There is no harm in this at all so why not? Why would anyone object?! These are hormonal meds. Most people say their body adjusts to them over time and any side effects like headache, dizziness, fast heartbeat, or nausea go away. That has been my experience too.
I have quite a few fractures. Mainly because I could not get on any meds or my doc didn't want to risk them. I come on this forum to tell people you do not want fractures! And you can feel strong (I was doing sword tai chi) and still fracture. Osteoporosis does not have symptoms until you fracture!
thank you for your helpful comments. You would think Tymlos would emphasize this option or at least mention it. So important for patients to take the initiative on their own to find the right solution. I've learned far more here than I have from any of my doctors.
Side effects:
For four months, I have been on Tymlos. Early on I experienced rapid heart rate for 2-3 days. A couple times it happened when starting a new pen.
Why Tymlos:
I have had osteopenia 7-8 years pretty much stable. I had taken Fosamax during that period. I am 77 with a family (mother and aunt) history of fractures and hunchback (in the 80s). My endocrinologist wanted me to start with Tymlos and if that doesn't suit me then switch to other meds. The reason being Tymlos after bone meds like Forteo, Prolia, etc. is not as effective but reverse gives better results.
The reason Tymlos might be less effective after Forteo, which is a similar med, is different from the reason it might not be as effective after Prolia, which works very differently.
Because Evenity "turbocharges" (saw this term online) bone growth, I have read that it is also more effective to do Tymlos/Forteo then Evenity rather than Evenity then Tymlos/Forteo at least in sequence.
Forteo is and IV once a year. I had my 3rd infusion in Noverber2022. I will be going back to Mayo in April 2023. Mine is covered by Medicare
I live in Traverse City, Michigan. I startedat Mayo first dose and continue with my doctor she sends Rx to an infusion clinic in town. 30 min and done.
@applesforall5370 orall5370 Forteo is a daily self-injection. I think you might be doing Evenity.
That's great! I'm hoping to start soon. Take care and continue your progress
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I had Reclast. It was a once a year infusion.