Forteo vs. Tymlos: Which did you choose?

Posted by suze317 @suze317, Oct 17, 2018

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!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@applesforall5370

I took Forteo for two years from a crushed lumber spine form osteoporosis. Mayo doctor said after that I regained 14% bone loss.

Jump to this post

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

REPLY
@katwhisperer

@windyshores thank you for sharing your experiences across so many helpful posts!

Do you know if there are any published articles or comments from other physicians or Tymlos themselves re: this appealing option to start lower & gradually increase by # of clicks?

None of my docs have heard of this - their Tymlos reps don't seem to know or mention it either. Just wondering if it's something your doc was smart enough to suggest because you experienced problems prior - or if it's a known approach across the board?

Jump to this post

@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!

REPLY
@windyshores

@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!

Jump to this post

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.

REPLY

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.

REPLY
@rajmayo22

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.

Jump to this post

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.

REPLY
@janflute

I looked onAmazon, but there are so many I am not sure which bottle to buy. I am going to Cozumel for two weeks. Please help!

Jump to this post

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

REPLY
@kolika

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

Jump to this post

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.

REPLY
@applesforall5370

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

Jump to this post

@applesforall5370 orall5370 Forteo is a daily self-injection. I think you might be doing Evenity.

REPLY
@applesforall5370

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.

Jump to this post

That's great! I'm hoping to start soon. Take care and continue your progress

1

REPLY
@windyshores

@applesforall5370 orall5370 Forteo is a daily self-injection. I think you might be doing Evenity.

Jump to this post

I had Reclast. It was a once a year infusion.

REPLY
Please sign in or register to post a reply.