Osteoporosis and Forteo (teriparatide): What to hear experiences

Posted by ans @ans, Feb 16, 2023

Wanting to hear people’s experience with using Forteo generally , good and bad. Concerned about having to travel and keeping it at the 36-46F range. Also would like to hear from those that used it 15-20 years ago and if any medical issues have come about that are related to Forteo.

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

You can also consider using Tymlos which does not require refrigeration.

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Welcome @ans, you may also be interested in these related discussions:
- Forteo vs. Tymlos: Which did you choose? https://connect.mayoclinic.org/discussion/forteo-vs-tymlos-1/
- Osteoporosis treatments: What did you choose? https://connect.mayoclinic.org/discussion/osteoporosis-treatments-1/

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I had forteo, shots over 13 years ago. I took the shots for a year and half. It worked great for me , no problem s at all. I would highly recommend , my bones are still good after all that time . It comes with a refrigerator kit to transport.

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@coldagglutinin01

I had forteo, shots over 13 years ago. I took the shots for a year and half. It worked great for me , no problem s at all. I would highly recommend , my bones are still good after all that time . It comes with a refrigerator kit to transport.

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Thank you for that!!!!. So helpful to hear from real people who have taken Forteo.

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I did 2 years of the shots with no results. However, my osteoporosis was accelerated because I was on prednisone for more than two year to for rheumatoid arthritis issues. So, I do not have a typical case.
It was tricky traveling and one hotel refrigerator froze it. I had to drive very far to get a new injector. The injector is supposed to give daily doses for about a month.
My co-pay was about $500 a month and then I fell into the "doughnut hole" and had to pay $4000 for two months. It then dropped back down.

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@coldagglutinin01

I had forteo, shots over 13 years ago. I took the shots for a year and half. It worked great for me , no problem s at all. I would highly recommend , my bones are still good after all that time . It comes with a refrigerator kit to transport.

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I’m new here and am not that familiar with how to navigate this site. Now that I’m in the osteoporosis group section I’ll say what I’m also really looking for is feedback on people’s experience with FORTEO , as that was recommended. (Thank you though for the info on Tymlos.) I want to hear the good , the bad, what side effects you encountered or not. And everything in between!!!! What were you transitioned to after you ended Forteo? Has anyone been on Forteo for more than 2 years as I hear that is a possibility now. Many Thanks !!!!

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@ans

I’m new here and am not that familiar with how to navigate this site. Now that I’m in the osteoporosis group section I’ll say what I’m also really looking for is feedback on people’s experience with FORTEO , as that was recommended. (Thank you though for the info on Tymlos.) I want to hear the good , the bad, what side effects you encountered or not. And everything in between!!!! What were you transitioned to after you ended Forteo? Has anyone been on Forteo for more than 2 years as I hear that is a possibility now. Many Thanks !!!!

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I took Forteo about 14 years ago for about 2 years. I didn't have any side effects at all. You do have to inject yourself everyday but the needle is very thin and I didn't really feel it. As to traveling; I had no problems. I had an insulate lunch bag with a blue ice freezer thing. I always kept it with me and when I went through TSA I had my prescription with me and let them know I had a cold pack. Never had any problems. When in the hotel I kept it in the insulated bag. My bone density went from a -4.8 to a -4.0; which is pretty good. I followed up with actonel but had to switch to reclast because actonel irritated my stomach.

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Hi,
I have been injecting Forteo for the past year with no side effects or problems. I qualified for the Lilly Cares program & receive the medication for free. I plan to have a bone density test in a few months & will report on my improvement (I sure hope!). Last September I travelled by plane & in my carry-on bag, I stored the Forteo injector in a small travel pack ordered on Amazon. It came with 4 very small ice packs & I went through TSA without any problem. I hope you will find what works best for you. Take care.

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@susanmarytheresa

I did 2 years of the shots with no results. However, my osteoporosis was accelerated because I was on prednisone for more than two year to for rheumatoid arthritis issues. So, I do not have a typical case.
It was tricky traveling and one hotel refrigerator froze it. I had to drive very far to get a new injector. The injector is supposed to give daily doses for about a month.
My co-pay was about $500 a month and then I fell into the "doughnut hole" and had to pay $4000 for two months. It then dropped back down.

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Wow ..that is so expensive...alot of people cannot afford that.....that is why I pay the price for algaecal..I know it is expensive but if I can avoid osteoporosis drugs. ....

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@susanmarytheresa

I did 2 years of the shots with no results. However, my osteoporosis was accelerated because I was on prednisone for more than two year to for rheumatoid arthritis issues. So, I do not have a typical case.
It was tricky traveling and one hotel refrigerator froze it. I had to drive very far to get a new injector. The injector is supposed to give daily doses for about a month.
My co-pay was about $500 a month and then I fell into the "doughnut hole" and had to pay $4000 for two months. It then dropped back down.

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I’m sorry your situation is so difficult. I hope you’ve been able to figure something else out. The freezing of the injector … I’ve heard that before and have wondered if you have traveled to another state like how do you remedy getting another injector quickly to keep up with the day to day dose. And also, I wondered about cost , so as I’m wrapping my head around do I take this medicine I called my insurance company. They said it would be $1980.00/ month . Pushing a bit they said Forteo has a coupon available if you qualify . I called them and they indicated it would be $4.00 per month till you hit $9,000 annually . After that you have to pay. So that would cost be near $18,000 for the remainder of that year. Then you do that all again the next year. WOW!!! I have a commercial insurance , so am not on Medicare yet. Kind of wonder what the difference would be. Thoughts??

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