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!

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@rutz

I am very concerned about starting Tymlos. There seems to be a wide range of side effects and what is considered a good effect from its use? Where does Prolio fit into this category? Is there a natural way to combat osteoporosis ?

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Good afternoon @rutz and welcome to Connect. I remember how I felt about Tymlos. I didn't even know anything about osteoporosis until I was 76. After acknowledging my bone dilemma, I started on Boniva and immediately had terrible jaw and face pain. My only options were Tymlos or Forteo. I chose Tymlos, mainly because of the refrigeration issue, I knew I would probably screw it up and ruin the medication.

Today we have Evenity which is relatively new. Its attraction is its ability to both build bone and protect bone. Having finished 2 yrs on Tymlos with absolutely no side effects other than a fuzzy tummy the first couple of days, I am now on Prolia to maintain what I have. My scan reported improvement although not statistically significant. And I have no evidence of fractures. Considering what a goofball I was with my history of falling down mountains and off horses, I am satisfied.

May you have comfort and be at peace.
Chris

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@artscaping

Good afternoon @rutz and welcome to Connect. I remember how I felt about Tymlos. I didn't even know anything about osteoporosis until I was 76. After acknowledging my bone dilemma, I started on Boniva and immediately had terrible jaw and face pain. My only options were Tymlos or Forteo. I chose Tymlos, mainly because of the refrigeration issue, I knew I would probably screw it up and ruin the medication.

Today we have Evenity which is relatively new. Its attraction is its ability to both build bone and protect bone. Having finished 2 yrs on Tymlos with absolutely no side effects other than a fuzzy tummy the first couple of days, I am now on Prolia to maintain what I have. My scan reported improvement although not statistically significant. And I have no evidence of fractures. Considering what a goofball I was with my history of falling down mountains and off horses, I am satisfied.

May you have comfort and be at peace.
Chris

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Thank you for the information. I know there is nothing you can take without risk but Tymlos has some serious side effects. Does taking it out weigh the risk of side effects is what I'm struggling with. I was on Fosomax for 5 years and said no longer. I didn't get worse but didn't get any better.

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@rutz

Thank you for the information. I know there is nothing you can take without risk but Tymlos has some serious side effects. Does taking it out weigh the risk of side effects is what I'm struggling with. I was on Fosomax for 5 years and said no longer. I didn't get worse but didn't get any better.

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I have just started researching Evenity. Any thoughts?

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@rutz

Thank you for the information. I know there is nothing you can take without risk but Tymlos has some serious side effects. Does taking it out weigh the risk of side effects is what I'm struggling with. I was on Fosomax for 5 years and said no longer. I didn't get worse but didn't get any better.

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That is the dilemma @rutz. Can you tell me which of the side effects of Tymlos worry you the most? At least you only take it one day at a time so you can stop if necessary. That is not true with Boniva....because you take it once a month. I found that after the first week of severe pain, it had begun to retreat about 50% by week four. That has something to do with the half-life of the dosage.

What happened with Fosomax? Your osteoporosis did not get any better or in other words, did not build new bone? My memory tells me that only Tymlos, Forteo, and now Evenity can build new bone.

I think the fact that my mother broke her hip at the age of 83 or so and never walked again played havoc with my mind. I remember hearing the crack as she fell to the ground. Perhaps we can still learn something from our Moms.

Please let me know your decision. I am here for you if you want to share your process.

May you be safe, protected, and free of inner and outer harm.
Chris

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@rutz

I have just started researching Evenity. Any thoughts?

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There are quite a few ladies on Evenity. You can use the search box at the top of this page to find them and their evaluation. I would have considered it........and yet I would still have had to find something at the end of the time for which Evenity is recommended.

My best,
Chris

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I was started on Tymlos for osteoporosis a couple of months before I had surgery on Feb. 13, 2019 to replace loose screws from a laminectomy and fusion of lumbar spine from T11 to L5. On April 19 I had my first check of blood chemistry since Dec. 18, 2018. The calcium was at a critical level at 13.3 along with several other vital blood tests that were also dangerously elevated. I was sent to two emergency departments and finally admitted for overnight fluids to flush out the calcium - hypercalcemia. I was told that at the level the blood chemistries were, my heart could have stopped and I could have died. Eleven months later I finally found a bone health specialist who told me that my blood chemistry should have been monitored more carefully and that would have prevented the crisis and I could still could take the Tymlos with proper testing. This was my experience with Tymlos if it helps anyone trying to decide to take it. I also had been on Prolia previously to Tymlos. After the first shot, I had a rash from my knees to ankles. After the second shot I had severe bone pain and more widespread rash and was then switched to Tymlos.

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@rutz

Did you try tymlos? And if so did you have side effects

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In reply to rutz…I did take Tymlos on two occasions but I couldn’t tolerate the side effects involving severe leg pain. I had some stress fractures in my foot, so my endocrinologist had me try it a couple times as the bones took a long time to heal, but no luck. I had also taken Forteo a long time ago, but could not tolerate that either due to getting migraines (which is a chronic illness I have). Each of us have different responses to medications or natural approaches, so I wish you the best as you manage your journey❤️

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@migizii

In reply to rutz…I did take Tymlos on two occasions but I couldn’t tolerate the side effects involving severe leg pain. I had some stress fractures in my foot, so my endocrinologist had me try it a couple times as the bones took a long time to heal, but no luck. I had also taken Forteo a long time ago, but could not tolerate that either due to getting migraines (which is a chronic illness I have). Each of us have different responses to medications or natural approaches, so I wish you the best as you manage your journey❤️

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Thank you

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I've been on Tymlos for about 7 months with no side effects. My only worry is their black box warning, which they say will be removed.
I hope when I do my scan, it will show improvement.

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I have had breast cancer and worry that Tymlos might increase chances of spread to my bones. I cannot find any info on this. Osteosarcoma is a different kind of cancer so maybe it's okay. I can tolerate Tymlos, I could not tolerate Forteo.

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